Hello new here and was just diagnosed with BAV.

[firrone79]

My name is Angie, I am 32 years old and just looking for advice and support. I know nothing other than things that I have read online about BAV. I had went to the ER back in July for stroke symptoms. ER doc after hearing symptoms diagnosed as atypical migraine. During physical exam he heard a murmur. I had been told off and on over the years that I had one, but was always told that it was a normal murmur. Anyways the ER doc referred me out to a cardiologist. Went to see him and he mentioned the possibility of aortic stenosis and sent me for a echo. The nurse called me with the results of that saying everything was fine and said that the doc wanted to follow up in 6 months. So fast forward to the 15th of this month. I went in for my follow up appt and that was when I found out that I had BAV. He didn't explain much to me outside of the fact that the aortic valve had two cusps instead of the normal 3. He ordered another echo and told me to come back in 24 months. I did ask him if I should be concerned for my children, he asked their ages and said that my two youngest (ages 2 and 3) can wait till they are teenagers to be checked. But that I should have my son checked now since he is 14. I have since gotten a referral to a local valve clinic for an eval/2nd opinion which is scheduled for the 22nd. I canceled the echo with the other doc, cause I am also scheduled for one the same day as my appt with the new doc. Symptom wise based on what I have read anyways the only issues I am having is some shortness of breath. Glad that I found this site! Have a wonderful day everyone!

 

[firrone79]

Oh also no family history that I know of. The only things that I know about is that my grandmother had mitral valve prolapse and a aunt (same side of family as grandmother) has a history of aneurysms of the brain. My father passed away at 42 from heart disease and an uncle passed away in his mid 50's due to a heart attack.

 

[ElectLive]

Hi Angie. Welcome to the community, although obviously sorry for the circumstances. My BAV was diagnosed at birth, which can be of great benefit, since it's on everyone's radar much earlier. That being said, the timing of my relatively recent surgery (18 months ago) was still a surprise, since it was a rapidly growing aortic aneurysm and not so much my valve that determined when it happened.

Not to alarm you at all, but if it were me, I would go ahead and have all your children see a pediatric cardiologist for evaluation. It may provide peace of mind, more than anything. My 2 1/2 year old went through an echo with flying colors, and while our newborn was slightly more of a challenge, she did very well too. We learned that both do not have BAV, a great relief, but we will continue to have them reevaluated at a minimum at age 5 and after the big growth spurt because they are potentially at risk for an aortic aneurysm, as a result of being children of someone with BAV. If you haven't seen, I actually just yesterday started a thread in this same forum titled "BAV and First Degree Relatives" that you may want to check out for a little more explanation.

At your age, I had over 30 years worth of echo's behind me, and very little change (failure) in my bicuspid valve. At age 35, my aneurysm quickly become a pressing issue, and was accompanied by moderate to severe failure of the valve. For some with BAV, this happens earlier in life, there are very many members here who faced surgery in their 20s. For others, it is much later in life when surgery happens, and for some, surgery is never needed. Your shortness of breath may be a sign of a problem with the valve, but an echo should much more clearly identify this. If they haven't already done so (they probably have), your aorta should be monitored for dilation - the precursor to an aneurysm.

You may actually have family history that you are not aware of, although usually that happens more with grandparents of someone your age than a parent or uncle. My grandfather supposedly died of a "heart attack". Almost certainly, it was not nearly so simple, and he likely had a genetic defect that no one was aware of because of lack of availabe imaging technology (echo, etc) at the time. A brain aneurysm is a suspected trait of some with BAV as well, although this has not been thoroughly proven.

It is not at all my intention to bring up any additional worry (sorry if I have!), but I think it's important for you and your family to be thoroughly evaluated to prevent any surprises. Like I said, your children may all be just fine, and your own valve might be doing well too (a 24 month checkup recommendation and no mention of valve problems fits in with this possibility). Best wishes with your next evaluation and don't be afraid to ask lots of questions. Hope to hear a good news update from you as you learn more.

 

[firrone79]

Thank you for your response! I did read your post about BAV and first degree relatives, which I had already told my sisters that they needed to get checked out and told my brothers sons mom (brother passed away 10 years ago) that she should talk to his doc about getting him checked. I had already spoke with my two youngest girls doctor and she said that she was comfortable with going with whatever my cardio recommends in regards to my daughters. I actually am more concerned for my youngest at the moment though cause on two different occasions since she has been born I have been told that they heard a murmur. But I do think I will push for an echo now on them. We are already in the process of getting my son checked.

I am really hopeful that the echo this week renders good news. Just scared! This is all new to me and don't know what to expect!! I had always known that I would at some point have issues with my heart, but not this!! My cardio during my first appt with him told me that giving my family history it isn't a matter of if I have a heart attack, but when I will have one. I will update after my echo and doc appt on Wednesday though!

 

[Paleowoman]

Hi Angie,

I was diagnosed with BAV when I was 25...but I'm now 58 and have not had the valve replaced yet ! My cardiologist thinks he'll be referring me to the surgeon in the next year or so.

No one has ever said that my son, who is 22, should see a cardiologist. I know these things can run in families but I also know that, like me and most everyone, a doc listens to a person's heart from time to time, so I'm confident that anything amiss will be picked up in my son when the time is right.

I get migraines sometimes, the ones with an aura - not sure if they're related to BAV but I had an MRI to check for aneurisms and I'm fine.

all the best...and try not to worry...easier said than done !

 

[ElectLive]

I actually am more concerned for my youngest at the moment though cause on two different occasions since she has been born I have been told that they heard a murmur. But I do think I will push for an echo now on them. We are already in the process of getting my son checked.

I am really hopeful that the echo this week renders good news. Just scared! This is all new to me and don't know what to expect!! I had always known that I would at some point have issues with my heart, but not this!!

A few types of murmurs in children are ultimately harmless and eventually go away, so not necessarily BAV, but again good to verify by echo given the circumstances just to be sure. I think those diagnosed at birth like me are much better off for it, rather than being hit with it all of a sudden in adulthood. Just keep in mind, your situation is now being addressed, many of the bad outcomes from heart issues happen in those that were undiagnosed.

 

[ElectLive]

No one has ever said that my son, who is 22, should see a cardiologist. I know these things can run in families but I also know that, like me and most everyone, a doc listens to a person's heart from time to time, so I'm confident that anything amiss will be picked up in my son when the time is right.

It's unfortunate, I think, how so many of us receive conflicting advice from our medical professionals for things such as this, exercise restrictions, when to operate, etc. I can't speak for the UK, but there are consensus Practice Guidelines in place here in the US that indicate that all BAV patients should have their children (and other first degree relatives) tested for both BAV and aorta disease. Does every cardiologist follow this? Unfortunately, no. But they should. My cardiologist didn't initially either. But my surgeon happened to be on the Task Force for the Practice Guidelines, and he not only made me aware of the recommendation, but also took some time to explain why the guidelines exist. Experts throughout the cardio field are asked to examine different aspects of heart disease and treatment and perform a thorough literature/study review, weigh the scientific evidence for or against a particular recommendation, then estimate overall outcome (as data allows) as a result of the recommendation. Then, after review of this expert analysis, the Task Force reaches a final consensus set of guidelines/standards for medical professionals to reference in their clinical decisions related to patient diagnosis, management, and prevention of related conditions.

But I'm rambling, back to your post. Keep in mind that some BAV murmurs are so slight that they are undetected in childhood, and even well into adulthood. Also, aortic dilation can not be diagnosed with a stethoscope, and half of those with an aortic aneurysm have zero symptoms. In my own experience, if my murmur had not been detected and echos done, I would have been at risk of aortic dissection and at severe valve failure without even knowing it, because I was actually symptom free all the way to the operating room.

But that was just me, so let me speak more generally. I think the most important point of all of this is that the odds of our children having BAV or aorta dilation are still overall very low. That's not why cardiologist evaluation is recommended. The guidelines here in the US are what they are because of the difficulty in diagnosing these conditions, the need for preventative measures to be taken even during childhood (prevent endocarditis with antibiotics for certain procedures and limit weightlifting to avoid extreme stress on the aorta, as examples), and the severity of the outcome if left undiagnosed.

 

[firrone79]

You know the funny thing about this is that at this point I am more concerned about making sure my children do not have it than I am worried about myself! I know that most likely they don't have BAV, but just the thought that there is that small chance that they have this as a result of me messes with my head. So once I rule this out for them I think I will be ok. Myself having it doesn't scare me, not yet anyways. But I still am so new to all this and am still learning about BAV. Although part of me deep inside keeps hoping that they read the echo wrong or something and that when I go wednesday they will tell me that I am just fine and do not have it. It just seems weird to think that this is real. Maybe I am just in shock/denial or something I don't know. Sorry for rambling, I tend to do that sometimes!

 

[Superman]

I understand where your post is coming from. I was born with a severe murmur and stenosis. They managed to hold off on a replacement until I was almost 18. I didn't learn about the hereditary nature until my mid-30's when an episode of Afib landed me in ER. I since have had to have a second OHS to fix and aortic aneurysm. I had three boys at the time I learned of the hereditary nature. None of them have any symptoms or even so much as a heart murmur. Only trace regurgitation shows up in an echo. However, two show a very mild presentation of BAV (three leaflets, two only partially fused). We do take them in for regular echo's just to make sure their involvement in extra-curricular athletics won't be an issue. It is comforting to at least be aware and know there are no restrictions yet. I have two younger children that have yet to be evaluated. They also have no hints of a murmur - so that's good as well.

In terms of family history - I know of nobody, extended or otherwise to have OHS or be diagnosed with BAV. My paternal grandfather was one of ten, and all lived to be around 80 (some longer, some shorter) with no heart surgery. Now I do have some curiosity about why their hearts gave out at that time as I know my grandfather did see a cardiologist - but my parents and extended family are very uncooperative and parents refuse to get themselves thoroughly checked out. Don't think anyone on my maternal side as even seen a cardiologist. They've got their own issues.

I do concur with your overall sentiment of getting family checked out for peace of mind and long term monitoring.

 

[Paleowoman]

I can't speak for the UK, but there are consensus Practice Guidelines in place here in the US that indicate that all BAV patients should have their children (and other first degree relatives) tested for both BAV and aorta disease.

I think it must be a US thing because definitely my cardiologist has never said anything about checking my son or my brother, and I've talked extensively with him about BAV.