From possible to confirmed BAV and all that is to come

[ChicagoBAV]

Hi everyone. Here's my story and where I'm at:

Five years ago (35/F):
I found out about my BAV by chance. I had an echocardiogram after experiencing symptoms that weren't heart-related after all. The echo report said the following, and I was told to check back in a few years:

• BAV could not be excluded
• No aortic stenosis or regurgitation
• Ascending aorta: 3.0 cm

Now (40/F):
I went to a BAV specialist, who confirmed that I have BAV with at least partial fusion of the cusps based on the previous echo images and the prominent click that they heard when listening to my heart. They sent me for an echo and MRI. The results of the echo and MRI just came in on MyChart and are as follows:

• Confirmed BAV with fusion of right and left coronary cusps
• Mild aortic valve thickening (noted on echo only)
• Trivial/trace aortic regurgitation
• No aortic stenosis
• Ascending aorta has grown from 3.0 to 3.3 cm

I was of course disappointed to find out that 1) I do indeed have BAV, after several years of hoping I didn't, and 2) things are starting to trend in the wrong direction with the AA growth, aortic valve thickening, and the small amount of regurgitation. I know this was bound to happen with aging, but I did start exercising vigorously for the first time at around age 37 (spin bike), so I wonder if that's accelerating the process. Before that first echo, I was extremely sedentary and walking was my only form of exercise.

I'm waiting to hear from the cardiologist about my recent results. I understand that my heart is working okay and surgery isn't on the immediate horizon, but I want to have a plan for when it happens. I already know 100% that I won't do a mechanical valve because I am extremely sensitive to noises and would never in a million years be able to sleep with the ticking. So, biological valve it is. I have a good idea of which surgeon I would be interested in, assuming they will let me choose.

I have urged my siblings to get screened.

I look forward to reading about everyone else's stories, and I send my best wishes to you all!

 

[Protimenow]

I can't and won't tell you which valve to get, but at your age, I strongly recommend AGAINST getting a biological valve.

The ticking is internal - not from an outside source, and you won't be hearing the heart as if it was a clock ticking outside your body. You get used to it. After a while, you won't even hear it unless you're in a quiet area and listen for it.

I don't think it will drive you crazy. You probably won't 'hear' it as much as your inner ears feeling the internal clicking.

I don't think that giving in to your sensitivity to noises probably justifies the risk and pain that having one or more surgeries to replace tissue valves. But only you can decide for yourself - with input from friends, family, doctors, and maybe a few of us here, who've also had to make this decision.

And, with the issue of sensitivity to sounds - maybe this will be minimized by adjusting your focus away from what you hear to other things.

 

[dick0236]

I understand that my heart is working okay and surgery isn't on the immediate horizon, but I want to have a plan for when it happens. I already know 100% that I won't do a mechanical valve because I am extremely sensitive to noises and would never in a million years be able to sleep with the ticking. So, biological valve it is

Welcome to the forum. You are very young for a tissue valve and even if you are lucky enough to get 20-25 years out of the valve you will need another operation when you are still in your sixties......and likely another surgery, or surgeries, after that. The "noise"is normally not an issue with most mechanical valvers. I would make this suggestion....."get a mechanical valve now and eliminate future surgeries. If you are truly that sensitive to the noise, have it removed for a tissue valve.......you have nothing to lose since the tissue valve will require additional surgeries anyway. You might eliminate the need for multiple surgeries once you get used to the valve noise....if any.

BTW, I received my mechanical valve at age 31 and still have it 56 years later. As I recall, it sounded like a ping-pong ball being struck by a paddle for a few months.......but I have not heard it for 55-1/2 years.......even our cat, who has remarkable hearing does not appear to hear it.

You seem to have analyzed your situation well......just don't be too quick to make decisions that will affect your life far into the future.

 

[pellicle]

Hey, welcome to the club

I look forward to reading about everyone else's stories, and I send my best wishes to you all!

lots of stories to read here. A good start is this sub forum
https://www.valvereplacement.org/forums/new-member-introductions.844370/
heck, even reading the signatures of each poster says a lot (not if you're using a phone however, the mobile view is of course stunted ... so use a tablet or a laptop

Best Wishes

 

[LondonAndy]

Hi @ChicagoBAV, and welcome. Before dismissing a mechanical valve because of the perception of noise, have you had the opportunity to talk to other women who have gone that route? Listening to them in a quiet room? I don't have a mechanical clock in my house because I hate that ticking sound, but I went with the mechanical valve to greatly reduce the risk of repeat open heart surgery - a big trauma to the body that gets tougher as we age, both because of natural weakening but also more scar tissue for a surgeon to deal with. I can honestly say that I have never particularly heard mine, and have to focus on the sound to do so. When you read other member stories you will find that some tissue valves in younger people have only lasted 7 years - young people's greater activity literally wears them out. So I agree with both @Protimenow and @dick0236.

Incidentally, it was in a Chicago hotel room that I had one of my finest insights into the American view: on the TV news, the anchor said: "And now world news. In Alabama ......"

 

[ChicagoBAV]

I expected a bit of paternalism on a forum for a disease that skews 3:1 male, but this is a bit much. I should have just said "I'm active duty military and unable to take blood thinners." I'm just kidding - I certainly appreciate all your input because you've all gone through it and your wisdom is hard-earned. I agree that the inevitability of 2+ surgeries is a huge concern, and this will not be an impulsive decision. I am aware of the risks and durations of tissue, mechanical, Ross, repair, etc. (and it's not worth considering Ross or repair because who knows if I'll be a candidate until the time comes). There is no perfect choice here.

I have read the personal experiences of many people who are bothered by the noise of the mechanical valve years later. I have struggled with insomnia my entire life and it colors my whole existence. It's not an issue of "giving in" to my anxiety or noise sensitivity; it's not a choice. I won't find the ticking reassuring. It won't fade into the background. That's just not how I operate. Apart from the noise issue, I simply don't want to be so aware of what my heart is doing. I once used earplugs that made me hear my heartbeat in my ear, and luckily that was solved by taking them out because it felt like my own personal hell. I don't want to feel that level of dread going into surgery. The blood thinners are also an issue for me, but to a lesser extent. Everyone's circumstances and priorities are different.

Another thing to note is that I'm only 40 now, but with luck I won't need surgery for a while. I'd love to get to that borderline age where choosing tissue isn't as unusual. And there's always the hope that there will be a more durable bio valve on the horizon. But as everyone here knows, it's all out of our control! It's hard to say what decision I'd make if I actually needed surgery at this age.

@LondonAndy Speaking of hotel room TV, on my last trip to London I enjoyed watching "Rip Off Britain" with my morning coffee.

 

[pellicle]

I expected a bit of paternalism on a forum for a disease that skews 3:1 male, but this is a bit much.

??
did I miss something?

 

[LondonAndy]

I expected a bit of paternalism on a forum for a disease that skews 3:1 male, but this is a bit much. I should have just said "I'm active duty military and unable to take blood thinners." I'm just kidding - I certainly appreciate all your input because you've all gone through it and your wisdom is hard-earned. I agree that the inevitability of 2+ surgeries is a huge concern, and this will not be an impulsive decision. I am aware of the risks and durations of tissue, mechanical, Ross, repair, etc. (and it's not worth considering Ross or repair because who knows if I'll be a candidate until the time comes). There is no perfect choice here.

I have read the personal experiences of many people who are bothered by the noise of the mechanical valve years later. I have struggled with insomnia my entire life and it colors my whole existence. It's not an issue of "giving in" to my anxiety or noise sensitivity; it's not a choice. I won't find the ticking reassuring. It won't fade into the background. That's just not how I operate. Apart from the noise issue, I simply don't want to be so aware of what my heart is doing. I once used earplugs that made me hear my heartbeat in my ear, and luckily that was solved by taking them out because it felt like my own personal hell. I don't want to feel that level of dread going into surgery. The blood thinners are also an issue for me, but to a lesser extent. Everyone's circumstances and priorities are different.

Another thing to note is that I'm only 40 now, but with luck I won't need surgery for a while. I'd love to get to that borderline age where choosing tissue isn't as unusual. And there's always the hope that there will be a more durable bio valve on the horizon. But as everyone here knows, it's all out of our control! It's hard to say what decision I'd make if I actually needed surgery at this age.

@LondonAndy Speaking of hotel room TV, on my last trip to London I enjoyed watching "Rip Off Britain" with my morning coffee.

Thank you for adding some background to your decision to rule out mechanical; at least you are aware of the issues.

You should beware of future "paternalistic" responses on the forum - it is largely the point of it.

 

[pellicle]

paternalistic

once I thought that having parents who cared for me was a good thing, apparently now it means:

relating to or characterized by the restriction of the freedom and responsibilities of subordinates or dependants in their supposed interest.​

Just based on the content in first post:

I'm waiting to hear from the cardiologist about my recent results. I understand that my heart is working okay and surgery isn't on the immediate horizon, but I want to have a plan for when it happens. I already know 100% that I won't do a mechanical valve because I am extremely sensitive to noises and would never in a million years be able to sleep with the ticking. So, biological valve it is. I have a good idea of which surgeon I would be interested in, assuming they will let me choose.

Accordingly I decided the the OP was clearly able to make decisions and needed no assistance from anyone here; and so to keep the lid on my Jar

I'll reserve them for people who are seeking input.

 

[LondonAndy]

Ah, thanks @pellicle , I was not aware of the change of definition, and simply thought I was encouraging the OP to confirm her decision was for properly thought out reasons, not making a decision for her. As a gay man without children, I don't have much experience in parenting!

 

[pellicle]

I don't have much experience in parenting!

me neither ...

According to Kupers, toxic masculinity includes aspects of hegemonic masculinity that are socially destructive, "such as misogyny, homophobia, greed, and violent domination"; these are contrasted with more positive traits such as "pride in [one's] ability to win at sports, to maintain solidarity with a friend, to succeed at work, or to provide for [one's] family"​

I was never much at sport (not least due to being born with a congenital heart defect, but I have managed to maintain solidarity with a good many friends from the earliest times in my life (as well as gather new ones). Accordingly I feel something when the elders of our small group here are slighted.

So I guess while I don't suffer from Kupers definition, I'm known for not suffering fools or passive aggressive bullying or indeed much bull5hit either.

 

[pellicle]

Hey and @LondonAndy , on the ratios:

https://www.sciencedirect.com/science/article/pii/S0033062020301250Authors:
William K.F. Kong , Jeroen J. Bax, Hector I. Michelena, Victoria Delgado

Abstract​

Bicuspid aortic valve (BAV), the most frequent congenital heart disease, is characterized by an uneven distribution between sexes. BAV is three to four times more frequent in men than in women which could be associated with a reduced dosage of X chromosome genes. In addition, BAV has a multifactorial inheritance, low penetrance and variable phenotypes that may lead to different form of valve degeneration and dysfunction over time as well as different incidence of aortic valve and vascular complications between men and women.​

although I note that most of the authors appeared to be male, this may skew the results

 

[3mm]

I have read the personal experiences of many people who are bothered by the noise of the mechanical valve years later.

ChicagoBAV - The thread Pre-Surgery -> "Mechanical Valve Noise and Quality of Life Study" has relevant information about this issue. Please consider the risks, pain, and work of a 2nd surgery in, perhaps, 10 years, when you make your decision.

 

[Gail in Ca]

I got a porcine valve at 34. It lasted 11 years and that was more than the 8-10 years it averaged.
I do not downplay the ticking noise. I hear it now while writing this. My cardiologist could hear my valve sitting across the room from me. My clarinet buddy thought it was someone’s watch. But I got used to it in time. It’s just part of me. I’ve had 3 surgeries when I only expected two. Now I’m seeing 2 doctors for a possible intervention for my severely leaking mitral valve. My advice is to plan you’re going to have at least one more surgery than you think you will have!
Open heart surgeries are not easy surgeries. I’m now in chronic a-fib from so many surgeries.
My valve sounds like a distant basketball hitting a wood floor.
I sleep fine with it. I suppose a white noise machine would help but I can’t be bothered!

 

[Chuck C]

Welcome to the forum ChicagoBAV

Thanks for sharing your story with us.
Sorry to hear that you have BAV, but it appears that you are probably a long way off from needing surgery, which is a good thing.

I was of course disappointed to find out that 1) I do indeed have BAV, after several years of hoping I didn't, and 2) things are starting to trend in the wrong direction with the AA growth, aortic valve thickening, and the small amount of regurgitation.

Mild aortic valve thickening (noted on echo only)

No aortic stenosis

For those of us who had to get surgery due to stenosis, mild thickening would be very early on the spectrum. You would typically have the thickening increase, then mild stenosis, then moderate then severe stenosis. Some people take 20 years to go from mild stenosis to moderate and you are not even at the mild stage yet. So, keep getting your follow ups, but from just these two data points, your imagery at age 35 and then again at 40, you really can't tell the rate of progression in any meaningful way. You might even end up being one of those lucky BAV patients who don't need surgery. Cross fingers.

Trivial/trace aortic regurgitation

This is a super common finding, even with people who don't have valve disease. When I was first diagnosed, I had my brother and dad get echos to see if they have BAV, which would be about a 10% statistical chance for immediate family members. Neither had BAV, but both had trace regurgitation. Personally, my echos would sometimes pick up trace regurgitation on one of my valves, only to have the next echo not find this. A cardiologist told me that almost everyone has trace regurgitation. So, I would not really regard the finding of trace/trivial regurgitation as much of a trend. Once you have had 4 or 5 echos, perhaps a trend will emerge.

Another thing to note is that I'm only 40 now, but with luck I won't need surgery for a while. I'd love to get to that borderline age where choosing tissue isn't as unusual

That is exactly correct. No harm in giving valve choice some thought now, but you might not need surgery for 35 years, and at age 75, it becomes a no-brainer.

And there's always the hope that there will be a more durable bio valve on the horizon

Good point. One of the advantages of being many years away from needing surgery, is that the current options available will have more data, such as the Resilia valve and TAVI, and there may be additional options for you.

This forum has been a great help to me and I'm very glad that I discovered it soon after I was diagnosed in 2019. I hope that you also find it equally helpful. It is always good to understand the journey of others who share our diagnosis and have been down this path.

 

[pellicle]

My valve sounds like a distant basketball hitting a wood floor.

hey this is pretty close to mine, but from the other side of the floor (so muffled).

 

[ChicagoBAV]

I'm very glad I found this forum and every response has been very valuable to me. The paternalism crack was truly a joke; yes, I did feel a bit talked down to by one of the responses, but I understand that was not the intent. When dealing with this recent official BAV diagnosis, it gave me a feeling of agency to make my own decision about valve replacement, but of course it's not final and will be subject to many different factors. I shouldn't have included that issue in my introduction at all, but you've all given me a lot to think about!

And @Chuck C thank you for your analysis of my test results so far and what I might be able to expect in terms of progression. Much appreciated!

 

[pellicle]

The paternalism crack was truly a joke

glad to read this.

Welcome aboard

 

[pellicle]

on these points

When dealing with this recent official BAV diagnosis, it gave me a feeling of agency to make my own decision about valve replacement

you do indeed have input in making that decision. The basis of a decision can be anything from a coin flip to first informing yourself, then determining your own personal biases (not easy) and finally weighing the evidence. There are many positions on that spectrum.

I am still uneasy about who I'm talking to here with regard to your earlier response and indeed the use of the word "agency" here and reminds me of this group:



However I'll accept that your above "The paternalism crack was truly a joke" is genuine

Another thing to note is that I'm only 40 now, but with luck I won't need surgery for a while. I'd love to get to that borderline age where choosing tissue isn't as unusual. And there's always the hope that there will be a more durable bio valve on the horizon.

As one who's had 3 surgeries (and may I add been lucky in my view to avoid many of the permanent injuries that surgery entails) I can see merit in the decision (at 40) to have a bioprosthesis as your first step.

While everything written above about risks and hazards is (variously) true and accurate) there is something else that needs to be factored in and that's how you feel about it all. As you rightly observe, there is no definitive cure for valvular heart disease and all the offerings bring with them compromises. There is no perfect solution. However unlike people I know who died of cancers and tumors our chances of recovery from what was once a fatal disease are excellent.

I believe now (more so than I did 10 years back) that having a bio as your first intervention can be a good thing. Its good because it transitions you from being able to recite data to actually possessing experiential learned knowledge. You grok it if I may use that word.

During recovery you become aware of what all those words people said mean when over (say) 10 to 15 years you go through recovery, to yearly examinations, to eventually turning the corner when Structural Valve Degradation (SVD) becomes an actual in your personal face reality. I recommend you read this about SVD.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209403/

You'll experience it and I believe that if you don't experience it you may well always wonder if that was what really happened. When people close to me have died suddenly and unexpectedly there was always some nagging part of my personal unconscious half expecting to see them ... this went on for years. This never happened to me with those who I saw getting sick, went to sit beside them during Chemo, went through remissions with them and then eventually there was no remission and I went to see them in their last days at the hospital and finally went to their funerals.

So based on what you've said, unless you decided otherwise I would suggest that you get a bioprosthesis and consider it not just "kicking the can down the road" but part of your personal life journey.

Remember, my journey started when I was about 6, with all the hospital visits (which increased in frequency) and then an OHS at 10, a (then called) catheter examination (as the technology was introduced) of how the repair was going, then at 28 got somebody elses valve, then at 48 (with the development of an Aortic Aneurysm) chose a mechanical valve with my bental.

I've since learned a lot about all of that and what it entailed and what I was lucky to avoid. I did however have a bit of a bumpy first year after an infection from the OHS #3 emerged.

https://cjeastwd.blogspot.com/2012/12/chest-wound-progress.html
which brings me to the idea that is important to keep: surgery is not magic, its a specifically and carefully crafted wound. True its done in the best possible conditions but its a deep and horrific wound which cuts through your chest and into your heart and actually cuts out parts of your heart.

People often feel this emotionally in a very visceral and overpowering way. Others just go "meh" and front up on the day. We all sit somewhere on that spectrum.

Best Wishes

 

[tom in MO]

...Incidentally, it was in a Chicago hotel room that I had one of my finest insights into the American view: on the TV news, the anchor said: "And now world news. In Alabama ......"

Really? You take the statement of a news anchor reading copy written by who knows who as an "insight into the American view..." In case you didn't know, Alabama is part of the world to a Chicagoan