Newly Diagnosed with BAV

[Guest]

Hello,

I am a 33 year old male newly diagnosed with BAV and have found reading the posts on this site to be very helpful. I am currently scheduled to see a cardiologist for the first time in about a week and wanted to get some thoughts on questions I should ask. A little bit of background:

- I have no symptoms but my doctor sent me for an echo because of a family history of BAV (my mother had her heart valve replaced initially 16 years ago and then just had another surgery to replace that valve last year).
- According to my doctor my echo showed I had a bicuspid valve but heart was otherwise functioning normally and my aorta was not enlarged (all good signs I think) and there are no restrictions on my activity.

As soon as I found the results I went to the internet and it looks like there is not much information out there on folks like me who are asymptomatic and what the progression of the disease is. I realize that this varies for everyone but it would be helpful to hear from folks who are in similar situation. Also, if there are any specific questions I should ask the cardiologist to help me prepare for the years of monitoring ahead.

I fully realize that I am lucky to have no symptoms so far and am probably years away from surgery but it has been difficult to process this information. Any advice or guidance would be greatly appreciated.

Thanks in advance.

 

[Paleowoman]

Hi - the murmur from my bicuspid aortic valve was first heard when I was 25 and a few years later a cardiologist was pretty sure it was bicuspid though he couldn't verify it on echo. Fast forward to when I was in my early 50's and valve was easily seen to be bicuspid and the pressure gradient across the vave had reached the moderately stenotic stage. I had the valve replaced when I was 60 when it had got severely stenotic. I never had any symptoms - not even just before surgery. Other people get symptoms well before. It's very individual.

The most important things I always asked when I had my echos was what was the "pressure gradient", the "ejection fraction", and the "valve area size", and if there's a problem with the aorta (aneurysm). Then find out when you next need an echo. At first they sometimes leave years in-between, then two years in-between, then one, then six months - it all depends on the progression of the stenosis, or regurgitation, if that happens.

Hope your mother is well !

 

[almost_hectic]

I was diagnosed right around 30 years old. Didn't need to do anything about til age 44, had my surgery just six months ago.

 

[JulienDu]

I was diagnosed with a severe stenosis BAV few years after I was born. I had an operation at 10 and I have done among the hardest and most physically challenging jobs. Do not worry, you will be fine

 

[MethodAir]

Diagnosed when I was 43 (last year). No murmur present until that age. One of the valve leaflets developed an acute tear and severe regurgitation (massive diastolic murmur) followed. Surgery soon thereafter. Had I known about the valve previously, and played it safe a little more, there is probably a chance the valve could have lasted a lifetime. There was no stenosis and the ascending aorta was not at a surgical point.

 

[AZ Don]

There is no inevitable progression of the disease, but you are at much higher risk for aortic stenosis (narrowing of the valve), aortic regurgitation (leaking of the valve), or thoracic aortic aneurysm. As I understand it, these issues are more likely when you are older (50-60+). While these things don't develop overnight they can happen at any age so generally you should be monitored by a cardiologist annually. I've read stories of people who put it out of their minds and didn't get checked for a decade or more - that can be dangerous. These issues generally progress over years and when they get to the point that they are dangerous, then surgery is recommended. Each of these issues can be fixed and there are better valves and surgical techniques in development, so the longer it is, the better your options may be. Then again there is a very reasonable chance (don't know the odds offhand) that you will never need anything but monitoring.

Learning that you are living with a heart condition can be a lot to take in. All I can say to this is just remember that these are all issues that can be fixed. Aside from occasional monitoring and possibly a surgery you can live a normal life.

 

[pellicle]

... Aside from occasional monitoring and possibly a surgery you can live a normal life.

or if you prefer (like me) live differently to a normal life and eat well, exersize and have fun.... I've tried to be normal and it wasn't fun ;-)

 

[Warrick]

Hi, well for me I was diagnosed with BAVD when I was around 31 but told years later, a murmur picked up by a nurse when I broke my hand.
I had an echo and was given the results a few weeks later by phone from the practice nurse at the GP as "everything's fine".


Then 4 years or so later I was having routine medical for my drivers licence, as I hadn't been to the doctor in that time I asked him about the scan and then I found out that the aortic valve was a different shape and told nothing to worry about, I had to google it to learn the term "bicuspid".

Read some figures and stats, found chance it could cause issues, never thought much more of it.. mentality it won't happen to me .
Last year at 38 was finding physical stuff when hunting harder, saw doctor, thought I'd be fine, 22nd September echo down the throat , and yep it's leaking bad. surgery 4th November 15 , mechanical valve, mitral valve repaired. Like an alien abduction haha.

Monitoring in our public health system was non existent for me, so that's a big plus for you.

I would like to think if I knew where I could/would be now when I was 31 I might/could have made healthier changes , whether this would have delayed or prevented surgery is a bit late now .
Incidentally my father has a mechanical aorta as well at 42 (near 32 years now I think). Rheumatic fever was the cause of his replacement, so unrelated.

AZ Don has hit the nail on the head with his comments

 

[FredW]

After reading the post from "guest", I was going to reply, since I have also had many questions when I found out about my condition. However after reading all the replies to date, I found that the replies did a great job of providing answers. The only thing I can add is that the data is not always consistent or conclusive. Some of us feel we should get precise answers, when the world of medicine can not always provide them. We must walk a fine line between accepting that and challenging incompetency or mistakes. The best way to balance that is to get as educated as you can.

As I did, you will find a great resource in this forum.

 

[FredW]

or if you prefer (like me) live differently to a normal life and eat well, exersize and have fun.... I've tried to be normal and it wasn't fun ;-)

Normal? Why would anybody strive for that?

 

[Paleowoman]

Normal? Why would anybody strive for that?

Quite agree. I never wanted to be so called normal even as a child ! Normal is boring. Normal is not thinking for yourself and being a yes man, or woman. I am so abnormal LOL I home educated my son in a country where it is not at all common - in the UK it is very unusual as compared to the US, also did it in the "autonomous" way. I went Paleo before it got trendy ! I went to a serious weight training gym where I was the only woman for ages, and a middle aged weight lifter to boot ! I hope I never want to be normal

 

[tom in MO]

Normal is just a setting on the washing machine

I read a paper that studied people who died from untreated BAV. They aged from 17 to the 80s; the median age was ~55, so it isn't just old people.

There's nothing that can stop what's going to happen with your BAV. It's not your fault, just the hand you've been dealt. So don't feel guilty if you don't become the super exerciser and health nut. You cannot exercise your BAV away or keep your surgery at bay, but overall good cardiac health won't hurt. If you smoke, quit a few months before surgery, it will make recovery a lot easier and less painful.

Per my cardiologist, the most important thing is to know the symptoms of aortic stenosis, maintain your health insurance and get the echos when scheduled. When your frequency of your echos goes from once every year or to once every 6 months...you are getting closer. Make sure they don't forget to tell you the results Been there done that. Have regular checkups, keep your blood pressure and cholesterol under control.

You may never get symptoms or they may come on slowly and you won't recognize them. That was me. From the NIH, the big symptoms of aortic stenosis include:

• Chest discomfort: The chest pain may get worse with activity and reach into the arm, neck, or jaw. The chest may also feel tight or squeezed.
• Cough, possibly bloody
• Breathing problems when exercising
• Becoming easily tired
• Feeling the heart beat (palpitations)
• Fainting, weakness, or dizziness with activity

 

[Paleowoman]

Normal is just a setting on the washing machine ]

Ha-ha - unless you haven't got a washing machine !

We do our washing by hand as the plumbing is so bad in our house that we can't have a washing machine !

 

[Warrick]

I had an achy jaw for a quite a few months off and on beforehand but did the man thing and ignored it, only found out after it was a symptom