Just got the news: BAV (Age 40)

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Hello all, and thanks for listening.

My story started 2 years ago (although if I think back, there are signs since childhood I will mention later). I was 38 years old, and working for a company that suddenly decided to close down. This was 2 weeks before Christmas, and we found out on Jan 1, 2013 we would be unemployed. As a single source of income for my family, I was pretty stressed. But, I had always had success before finding new jobs so I took on the challenge. I thought it would be smart to "load up" on interviews, giving myself the most options. So much so, that I even had one week where I had five long interviews in 4 days (two in one day). I'm also going to add that for 18 months before the job loss, I had been getting VERY fit. I had lost 50 pounds over 2 years following a Paleo diet, and doing CrossFit. By November, I had hit my goal weight of 215 (from 267 a few years earlier), and was doing Crossfit workouts, eating clean whole foods and was able to run a 5K in about 8-9 minute miles. Nothing special, but for a guy who used to only be able to run 1 mile at 12 minute pace, I had come a long way.

I am a computer programmer for a living, but an aging one ... meaning I am no longer the youngster who is up on the latest and greatest coding techniques. So this time around, as the expensive veteran, I was having a harder go at it. I was told by some "you seem a little rusty on your skills", and by others that I was overqualified or too expensive. I later found out this was just bad luck but at the time I began to think my star was falling. On a Friday following the 5 interviews in 4 days, I was off and taking a nice morning shower, when out of the blue I got hit with what I have been describing as an arrhythmia. In the shower my heart started to flip flop, and it seemed to be missing beats or beating in a random sequence. At the same time, I got light headed, and felt weak. All my life I had been hit with random one-time skipped beats that would happen at random a few times per year, but this one persisted, and it scared the heck out of me. I tried to cough (this sensation makes me feel compelled to cough to fix it), but to no avail. Got out of the shower, wet and naked, and went into a panic. I texted my wife who was at work that I thought I was having a heart attack and to rush home. I tried to lay down on my bed and be calm, but that seemed to amplify the effects. After a minute or 3 (lost track of time), it resolved itself, but I was left in a state of panic.

Needless to say, when my wife got home we decided to head to the ER. I was feeling better within 10 mins so then I redirected her to the walk in clinic. By the time we got there, I felt normal, and didnt want to wait for 40 mins in a sick room. So we went home. I chalked this up to anxiety (and to this day I still think that may be all it was). But my brain was now changed, and I had a fear I had a heart issue. Sure enough, a couple of nights later I got more of these arrhythmia palps that lasted for about 10 seconds. This again scared the heck out of me, and around 1 Am that night I had my wife bring me to the ER.

I had the ECG, blood tests, an X-Ray done. Docs listened to the heart, and said everything was fine. As they told me, I felt better. Could it just be anxiety??

The next 2 years were all over the place. I would have periods where I felt better. For a bit I tried to go back to Crossfit again, a little out of shape after having taken 3 months off and having put 10+ on. But after one night where I got some palpitations during the warm ups and panicked, I decided to ease off the hardcore exercising. I still felt my heart was telling me something. Over the next 2 years, I would have periods where anxiety was very high, and I could hear my heart pounding. I would wake up feeling OK, but within a few minutes of getting out of bed my mind would train on my heart. I would try to ignore it, but couldn't. I went to a Cardiologist without even asking for a referral. He say me down, listened to my heart and looked at my 30 second long ECG, and said everything sounded great. He said if I wanted, he would schedule me for a stress test, and I accepted. He also gave me a prescription for Lorazepam saying it was anxiety in his mind. I sort of ran out and just got the Rx filled and tried it. Took it every day. Helped a little, but in time I found myself feeling crashes from the low dose and it would make anxiety hit. I wondered if it was just making the anxiety worse. I did the stress test, Bruce protocal, and from what I remember did very well. I want to say I made it through 6 or so segments, and was running pretty hard uphill toward the end. The crossfit and running had paid off. The test seemed fine, no issues. I felt a little better.

But symptoms did not subside. I continued to have heart pangs, aches and sometimes just soreness in the chest area. Sometimes it would be at the sternum based between the nipples (on a guy). Other times, I would feel aches up higher, around where the collarbones come together below the throat. Of course, other times I would feel aches off to my right side, or just under my right shoulder, and the fact these things moved around made me think I must be manifesting them in my head. But there were other things. Playing golf, I noticed when walking the course, big hills left me very winded. More so than my peers - or at least it seemed. Granted I had also packed back on pounds. Maybe back to the 240s at this time. And I also wondered if anxiety and panic were making me feel breathless when I walked up the hills. I grew to fear them, even rented a cart to play 9 holes a few times and said it was a knee issue. I remember walking up 4 large flights of stairs ar Grand Central station from the lower levels because the escalator was broken, with a backpack, and it was a scary thing. I was in the middle of a stairway with a hundred other people like cattle, none of them wanted to stop. I wanted to stop, I was getting breathless, but the cattle behind me and hundreds of people made me keep going. I wondered if this was the silly way I was going to die. I got to the top and was mildly gasping for air. I looked at other people, older people even, and they seemed fine. Was this anxiety and panic or a symptom?

Sometimes I will feel short of breath. Sometimes not. Sometimes I can feel my heart beat, and literally feel the flaps closing. Other times not. I struggle with trying to deduce whether or not it's just anxiety causing the symptoms, or do the symptoms trigger the anxiety? Either way, what scared me was that up to age 38, aside from being a little bit of a hypochondriac, I never had these issues. They hit out of the blue.

One thing that bothered me with my cardiologist, at least in my head, was that he never really LOOKED at anything inside me. Just the ECG, the stethescope and the stress test ECG. He also gave me a 24 hour Holter monitor but nothing really happened in those 24 hours. My arrhythmia type issues over these 2 years would happen at random, and it may be many months before one happened, and when it does happen, it lasts either 1 second, or like 10 seconds (the latter scare me more than the former, which I had even in teen years).

I went back to my GP this year for my physical, and told him I still wasn't feeling right. I could feel my heart at times, very anxious, sometimes mild chest pain that I couldn't tell if was muscular or from the heart itself. I told him my libido was low, and felt tired. I asked him about testosterone. So we had that checked, and low and behold, it came back very low. Now, was my low T a cause of my anxiety symptoms? Or was chronic anxiety driving down my T? Not sure, but thankfully my young doctor felt that I didn't seem like the overly anxious type, and he wanted to check a number of things to be safe - I told him I wanted to go back to a cardiologist and at least do an echo. I was worried I had some kind of enlarged heart or something ... but looking at it made sense to me. So he sent me to a different cardiologist that specializes in eletrical issues of the heart to maybe explain the arrhythmias and skipped beats. We did the ECG, another stress test and an echo.

This time around, I found out that from my echo, they saw that I had Bicuspid Aortic Valve. The cardiologist telling me that day wasn't my cardiologist, just his partner, and he literally have me a 120 second rundown. He said your valve looks fine, no issues. Good to go, and that many people live their whole lives without even knowing they had it. I guess that was great news, but he didn't answer many of the questions I had in my head, and I was still stunned from the fact that I was born with a defective heart valve, no less the one that leads to the aorta, which I knew enough about human biology that it was fairly important. So I walked out in a daze, with very little info to go on. Of course, I googled for BAV that day when I got home, and that's when I started to panic again. The Cleveland Clinic page on BAVD makes it sound like all of us are just open heart surgery patients waiting to happen, and that aside from the valve itself (which came with a pick your poison decision on artificial valve or short-lifespan biological pig valve), that all sorts of aortic issues could exist (or both!). So naturally I was then convinced that even though the valve looked good, maybe my aorta is sending these warning signs in the forms of aches and such?

So I called back the next morning and asked to speak to MY cardiologist. He made the time for me and answered about 10 questions I had. In a nutshell, he said my valve looks totally fine. Bloodflow and such looks like that of a normal 3 flap valve. I asked about the aorta, and he said the aortic root looked normal, the heart size and chambers seemed normal. I asked about weight lifting (which I do), and cardio exercise, and he said multiple times "no limitations" and that we would just check back on it at some point in the future. I asked about my children, and should they be checked. He didn't think that was worth the anxiety it might cause them (they are 14, 12 and 8, and all girls). I told him my oldest, who had been a 2-sport star between ages 5 and 14, had shown signs of always being tired on the court/field, and she even passed out once in the middle of a practice. Collapsed! I was there, it scared the heck out of me, but we chalked it up to dehydration and the fact she hadn't eaten all day because she had a stomach virus the previous two days. He seemed more concerned about that, but still felt it wasn't worth checking her at this stage. In the last year, she has quit soccer, and now is about to quit basketball, and its clear to me that she is out of shape and hates the running part of it. Which reminds me of myself at her age.

So, that brings me back to my childhood. I was an athlete too. I played all the sports as a youngster, and then widdled it down to baseball as a teenager, and even went on to play baseball in college. I always noticed in my late teens and even in college that my cardio stamina was never normal. I was great for short bursts of energy, but run a mile? After 2-3 minutes I began to feel like I wasn't getting enough oxygen and would always fade away. I just assumed some people are built for endurance, some aren't. Like I said, I worked my way to a 8:30 mile pace for a 5K, but that was extremely tough on me. Max heart rate, etc.

Crossfit was even worse. The workouts there are intense, such as 15 minutes of high intensity stuff non stop. There were times where at the end I would drop to the floor, lay on my back and feel my heart POUNDING in my throat, gasping for air. Man, if I knew then what I know now I don't think I would have stayed with that. I did it for almost 2 years! Sometimes my upper chest would be sore the next day, but I passed that off back then as lung expansion, no biggie. Maybe that is all it was.

So now here I stand. I am 40, diagnosed with a very scary BAV. I think about that little fish mouth now and it freaks me out. I went to the gym today and was doing some dips and got off and felt my heart pounding, and I thought of the little engine that could in there, my little fish mouth valve. Freaks me out. Or is the valve fine and my aorta isn't? They mentioned the echo looked at the "aortic root" and it seemed normal, but I'm sure there are people who have issues further than that. My fantasy is that I can live my whole life with my little engine that could valve and there would be no issues. My next choice would be that sure, when I am in my 60s and my kids are through college and such, that I can have something dealt with and the latest and greatest technologies will make it that much easier and safer. My fear is that something may arise soon, and/or worse, that the doctors continue to miss and overlook things.

Are my symptoms real? I'm glad that I kept pushing my doctors to check and recheck my heart. My instincts were right. I had 3-4 different doctors tell me everything was perfect. None of the experienced cardiologists heard anything close to a murmur or sound from my valve. I also have a sleep apnea sleep study planned in case that was contributing to my anxiety or low T levels. I'm taking clomid for the low T. Instead of injecting testosterone, I am taking a womens fertility drug that supposedly tells your pituitary to make more T (and LH and FSH and estrogen) to see if you can jumpstart things naturally. But I still wonder if the low T is just from the chronic long term stress and anxiety of the last 2 years. having said that, I feel more energy and less fatigue on the clomid so far.

My wife has been very non-understanding. She keeps accusing me of just being anxious, thinks I am fine because the doc said I was, and wants me to get over it. I can't tell you how much this bothers me ... when she thought she had breast cancer, I was very careful to stay positive for her, but also let her vent and talk and be supportive. That's not her way, she takes the other approach, doesn't want to hear it. This just makes me feel worse and that I have no one to talk to about the fears or concerns. So I keep it all inside, hide this all from my kids (who sometimes wonder why dad doesnt feel like playing with them), and suffer one day at a time.

If you read through all of this, thank you so much for getting this far. It is cathartic just to get this out there, especially with a group of people who are likely to overlap in issues and understand my fears.
 
Sorry, not sure why this posted as Guest, and double posted. It threw an error on me trying to post it, but I tried hitting post again and got the same error, but both went through as Guest even though I was logged in.
 
Hi Henry,

I'm not sure there's much anyone can say to reassure you with your fears, but I wanted to tell you about myself just in case it helps a little. Btw, I eat the paleo way too ! Hence my screen name :) i don't eat paleo due to weight issues though, I've always been thin, but I eat that way because I feel it's healthier and I enjoy it too. I've been eating this way for nearly eight years now. I also do high intensity weight lifting.

When I was 25 I had to see a doctor about a chest infection. He said straight out that I had a heart murmur. I was surprised. He was surprised too that I didn't know about it as the murmur was so obvious....but then probably no one had listened to my chest since I was a young child. I saw a cardiologist who was sure I had bicuspid aortic valve, he could tell from the particular sound of the murmur, but when I had an echo he couldn't see it. This was 37 years ago and echocardiograms weren't so sophisticated then. Every doctor who listened to my heart could hear the murmur but nothing was done about it and I felt fine, never any symptoms. Then nearly nine years ago a gastroenterologist who was listening to my abdomen commented on the murmur as he could hear it even in my abdomen. He suggested I see a cardiologist again. This time the cardiologist could see the BAV clearly on echocardiogram and told me that I'd need an operation one day, but for the moment just carry on as normal and to have yearly echos which I then started having. I was pretty shocked though to hear I'd one day need open heart surgery. I was determined to stay as fit as possible and to even try and reverse the stenosis my BAV had - in my own way with supplements such as omega-3, vitamin D and vitamin K2. But 18 months ago, when I was 60, the cardiologist referred me to a surgeon for aortic valve replacement as the stenosis caused by the valve had reached a certain critical point. I was really surprised as I had never felt fitter ! Absolutely no symptoms at all ! I was lifting really heavy weights and doing tons of walking. Of course I cut down on the weights at that point but still carried on. I had surgery in Januray last year….the day before surgery I did a six mile walk and lifted some weights :)

I suppose what I'm trying to say is that a person can have BAV and have no symptoms or they can have symptoms, but usually if there are symptoms it is when the heart is beginning to 'suffer' from the stenosis or regurgitation that having a bicuspid valve can cause.

Why don't you schedule a repeat appointment with a cardiologist in a year or so just to keep an eye on things if you are worried. And keep yourself healthy !
 
Thanks for the response Anne! Glad to hear that you were able to ride it out for so long and that your surgery sounded successful.

I think if I had no symptoms and a doctor just heard a murmur I might think all was well. The fact that symptoms around my chest area drove me to see a doctor and a cardiologist, and then I asked for a second opinion because I was still feeling things - at which point they found BAV, has me concerned about what else they may have missed.

They may also feel I have some minor stenosis and regurgitation but for now are just telling me "you are fine" to keep my mind off of things. I can appreciate that, as long as I don't keep over and leave my kids without a dad :)

I know I have BAV, and I know I have some level of anxiety. Just hard for me to tell where they overlap since the anxiety - also known as the great mimic - may be what's causing the symptoms.
 
HenryCT;n856196 said:
I think if I had no symptoms and a doctor just heard a murmur I might think all was well. The fact that symptoms around my chest area drove me to see a doctor and a cardiologist, and then I asked for a second opinion because I was still feeling things - at which point they found BAV, has me concerned about what else they may have missed..
I can appreciate your worries since they missed the BAV at first, worries that they have missed something else, though it does seem that BAV is something not always easily seen on echo. But as regards the murmur - the murmur of BAV is an indication either of the severity of regurgitation or that stenosis has reached the stage where it is affecting the heart as the flow of blood through the BAV is being 'turbulent' due to the smaller valve area or the leaflets becoming stiff from calcification caused by the turbulent blood flow. However, the heart can carry on for years (like mine did) even when quite stenotic as it can compensate for the harder work it has to do. I, and everyone with BAV, including you, was born with it but it's not always heard at birth. In fact if it is heard at birth I think that usually means that valve replacement may be more likely imminent, perhaps even in babyhood or early childhood.
 
Paleogirl;n856197 said:
I can appreciate your worries since they missed the BAV at first, worries that they have missed something else, though it does seem that BAV is something not always easily seen on echo. But as regards the murmur - the murmur of BAV is an indication either of the severity of regurgitation or that stenosis has reached the stage where it is affecting the heart as the flow of blood through the BAV is being 'turbulent' due to the smaller valve area or the leaflets becoming stiff from calcification caused by the turbulent blood flow. However, the heart can carry on for years (like mine did) even when quite stenotic as it can compensate for the harder work it has to do. I, and everyone with BAV, including you, was born with it but it's not always heard at birth. In fact if it is heard at birth I think that usually means that valve replacement may be more likely imminent, perhaps even in babyhood or early childhood.

Fair point, that the fact it can't be heard yet and was so hard to detect means it may be very benign right now. That does make me feel better.

Does anyone else feel their heart beat all the time?

The other question I have - after doing cardio, does anyone feel a sensation above their heart that is hard for me to explain. It's like sweet and sore. Maybe like that tickle you get in your lungs when you swim all day in a pool, but it feels like its more in the muscle area above the heart. It's so hard to describe, I can't explain it.
 
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My husband is a BAV. Very long health story. I would suggest you look at the website: Bicuspid Aortic Foundation. It is run by a friend of mine Arlys Velebir. My husband's surgeon is Dr. Sharo Raissi. He has been following BAV patients with earnest. We are currently having my son tested every 5 years. Currently 29 years old. First CT nothing came of it. The last one we did at Stanford last summer we are beginning to see some changes with him. But nothing worrisome yet.
 
Henry! Welcome, you came to the right place! I understand your wife - my husband suffers from anxiety and I just don't understand it. Once diagnosed, my valve took about 11 years to decline to surgery level. The last 18 months of that decline was rather steep.

I did used to feel my heartbeat. I was greatly affected by extreme temperatures. I threw shot & disc in high school, and the track coach always tried to get me to run, but I hated it so much (it burned!).

My surgeon told me that my own valve would always be better than anything he could put in me, but I disagree. My body failed me with the bi-cuspid part, and then nailed me with the stenosis. I love my new valve, I am reassured by the ticking. But still...every once in a while...once or twice a month...I'll feel a flip flop, or a twang, and I'll catch my breath and stop what I'm doing and listen,

We went for a 4-mile walk night before last in the Florida evening heat & humidity. I had to slow down so my husband could keep up with me.

I read that there is a nerve that wraps around your aorta - maybe a vocal nerve? I wonder if that's what causes the tickle feeling you describe. Some patients have a chronic dry cough before surgery.

This forum is AWESOME - a great place to bounce your fears off of without "prying eyes." My husband has never read any of my posts here. I also used Adam Pick's site, but only to keep friends/family/coworkers informed of what was going on.

Again, about your wife - I'm betting she's just as scared as you are. There are two pretty easy reads out there - "The Patient's Guide to Heart Valve Surgery" by Adam Pick, and "
Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues" by Cohan, Jude, & Pimm. Both books were a huge helpt to me, my husband, and my parents.

BUT it sounds like you might be a ways off from surgery. It's tough to carry on with daily life when you know there's a serious medical issue looming. Can you find a counselor to talk to through your employer's EAP? This definitely isn't an issue to keep inside.


Meredith
 
Welcome Henry!

The doctor first heard a murmur when I was 20. BAV diagnosed at 21 via echo. I am now 38. I have moderate/severe stenosis. I also have regurgitation. My valve area was just measured at 1.1 cm on 4/30. I have had tons of psychosomatic symptoms over the years. I always get better after the doctor reassures me. The weird beats, like yours, have been occurring for about 10 years. I am having echos every 6 months now. I'm sure I am getting close. I have less than 3 years by my own estimate. Don't worry you're normal. Your valves not, but you are.
 
HenryCT;n856198 said:
Does anyone else feel their heart beat all the time?

The other question I have - after doing cardio, does anyone feel a sensation above their heart that is hard for me to explain. It's like sweet and sore. Maybe like that tickle you get in your lungs when you swim all day in a pool, but it feels like its more in the muscle area above the heart. It's so hard to describe, I can't explain it.
Hi again - I feel my heart beat most of the time. Particularly since I had my valve replaced, and it's a tissue valve, not mechanical. The 'murmur' is also described as louder since surgery - doctors can actually get confused by it (I am used as a patient in doctors' exams when they want to move up to specialist level) - but it's louder because now that my stenotic BAV is replaced by a trileaflet valve the leaflets all close neatly, hence it's louder, but 'normal'. In the last month prior to surgery, when I was naturally anxious about the actual surgery, I would sometimes feel my heart beating really strongly and fast, but I think they were due to anxiety. I'm also thin and have a slightly depressed sternum which means my heart is near the surface of my chest - a person's individual anatomy can make a difference to how loud the heart sounds.

Have you had the place where you get that 'sensation' checked out ? Have you had your lungs checked out ? A person can have more than one thing 'wrong' with them at the same time - something I've learned and which also confuses doctors, at least which confuses specialists, you need a good generalist sometimes.
 
Hi, Henry! I rarely post, but I'm kind of in the same boat. My BAV was diagnosed incidentally at the end of my last pregnancy. My oldest daughter has it as well, and she has no issues.

I was supposed to have other tests to confirm because (like you) nobody looked at ascending aorta. My root and valve are fine with the exception of the BAV. I had just given birth and was breastfeeding and ultimately my cardio did not think the tests were urgent. My annual appointment is next month so I should know more then.

All that to say, I hate thinking about it. And I'm always thinking my aorta is about to tear or burst! I think about it every day. Honestly even if my ascending is normal I'll probably still worry about it. The BAV foundation website is great, but it makes me feel like everyone I'm related to needs a full body scan. Makes me really nervous.

I try to just lean on faith and stay calm...I mean what can I do anyway? I just wanted you to know you are not alone in feeling like you do. I hate thinking about it, too.
 
Also, I agree with you on the websites. Some make it sound like surgery will happen eventually, but I've heard here that only less than half fall into that category.

I also get confused with the 2% prevalence everyone sites. Since it seems one can have BAV aorta issues and yet have a 3 leaflet valve or some other variation, I'm not sure if that means the prevalence is higher? Meaning the 2% is just strictly referring to the people with 2 leaflets?
 
UNCGIRL44;n856211 said:
I also get confused with the 2% prevalence everyone sites.
I'm not sure I believe in that prevalence of 2% becasue I've never actually met anyone else in person who has BAV. If 2 out of every 100 people had it I think I might have met at least a couple of others in my life, but no. My son has autistic spectrum disorder which has a prevelence of 1% in the population which is only 1 in 100, yet I've come across several people with that.
 
I agree Paleogirl. I do not know. One thought is that it is hard to know you have it unless it's not working or you otherwise suspect it (runs in your family, it's an incidental finding). It's not something I ever bring up to others. It's funny you say that though. I actually did meet another person who had it last week. It's a long, random story. But I was shocked!!! That's the only time it happened. I often think about how common it would truly be if that is true, and I'm like you....just seems like too many people.
 
I just remembered too that out of about the six people on the cardiac ward I was on when I had my surgery, I was the only one having an AVR - all the others were having CABG !
 
Maybe your wife is more in a state of denial and it comes off as not understanding? I was diagnosed with BAV last Feb at the age of 44 and had surgery 4 months ago. My valve was also considered fine, great flow, trace leakage, but I had an ascending aneurysm along with it. I was told I could wait for surgery as it was measured at 4.8 cm ( turns out it was 4.99 ) but I made the easier said than done decision to get it over with. I know on this side of it it's easy for me to say but it wasn't as bad as most of us, including me, fear. Three months later I was back to work and just yesterday I spent a few hours out kayaking with my wife and son. Physically I already feel almost as if nothing happened.
As for the kids my son is 8 and had a trileaflet valve but my surgeon said that when he gets up near 20 we should have him checked anyway. Maybe because of the theory if elevated aneurysm risk even though his valve is normal?
 
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cldlhd;n856215 said:
Maybe your wife is more in a state of denial and it comes off as not understanding? I was diagnosed with BAV last Feb at the age of 44 and had surgery 4 months ago. My valve was also considered fine, great flow, trace leakage, but I had an ascending aneurysm along with it. I was told I could wait for surgery as it was measured at 4.8 cm ( turns out it was 4.99 ) but I made the easier said than done decision to get it over with. I know on this side of it it's easy for me to say but it wasn't as bad as most of us, including me, fear. Three months later I was back to work and just yesterday I spent a few hours out kayaking with my wife and son. Physically I already feel almost as if nothing happened.
As for the kids my son is 8 and had a trileaflet valve but my surgeon said that when he gets up near 20 we should have him checked anyway. Maybe because of the theory if elevated aneurysm risk even though his valve is normal?


My wife is the type who just takes the doctors at face value. For better or worse, I am the opposite. For instance, my doc said my heart sounded great, but I decided to go to a cardiologist anyway on my own. That cardiologist said my heart sounded great, and just gave me an Rx for Lorazepam, said it was just anxiety. So I went down that road for a while, but the symptoms persisted, and my mind kept working at me, and eventually even my GP said he would rather be safe than sorry, and he referred me to ANOTHER cardiologist. I also asked for an echo, because in my words to the doctor I said "what bothers me is that no one actually LOOKED at anything". Just a quick ECG, a stress test and on my way. So this time, which I see as my third attempt to get a diagnosis, they DID find the BAV.

I just find it too coincidental that in the past 2 years things have "acted up" and I have noticed some physical symptoms:
- Shortness of breath (comes and goes)
- Sensation of "something" in the chest area ... hard to explain it concretely ... this is almost always there
- Increase in PVC frequency ...

But my wife would have stopped when the first doc said it sounded fine.

You mention the ascending aneurysm - is that something my echo would have seen? I asked him about the aorta, and he said the aorta looked fine.
 
UNCGIRL44;n856213 said:
I agree Paleogirl. I do not know. One thought is that it is hard to know you have it unless it's not working or you otherwise suspect it (runs in your family, it's an incidental finding). It's not something I ever bring up to others. It's funny you say that though. I actually did meet another person who had it last week. It's a long, random story. But I was shocked!!! That's the only time it happened. I often think about how common it would truly be if that is true, and I'm like you....just seems like too many people.


Having said that, it's not typically something people would share. Earlier someone made a comparison to autism, but autism of often instantly recognizable. In addition to the many people that have BAV and don't know it, I know I for one don't plan to tell anyone other than my wife, parents, siblings, doctors, and my boss - in the event I need doctor flexibility. But friends, strangers, forget it.
 
UNCGIRL44;n856210 said:
Hi, Henry! I rarely post, but I'm kind of in the same boat. My BAV was diagnosed incidentally at the end of my last pregnancy. My oldest daughter has it as well, and she has no issues.

I was supposed to have other tests to confirm because (like you) nobody looked at ascending aorta. My root and valve are fine with the exception of the BAV. I had just given birth and was breastfeeding and ultimately my cardio did not think the tests were urgent. My annual appointment is next month so I should know more then.

All that to say, I hate thinking about it. And I'm always thinking my aorta is about to tear or burst! I think about it every day. Honestly even if my ascending is normal I'll probably still worry about it. The BAV foundation website is great, but it makes me feel like everyone I'm related to needs a full body scan. Makes me really nervous.

I try to just lean on faith and stay calm...I mean what can I do anyway? I just wanted you to know you are not alone in feeling like you do. I hate thinking about it, too.

You have my support, and it makes me feel better to know that I am not alone in the worry. In addition to the mortality fears, I also am the only provider for my family and kids, who are ages 8, 12 and 14. My wife and I decided to have kids young (I was 25, she was 23), and she also wanted to be a SAHM. That means she spent 14 years shortly after college without a career, and now can only earn a few bucks here and there as a part timer. I make all of the bacon, and I worry about my kids and her without income, as well as my kids losing their father so young just because some doctor somewhere was lazy.

How does one test the ascending? MRI only? I recently had an MRI done on me for possible appendicits, but it may have only been the abdomen. I wonder if that can be looked at.
 
MrsBray;n856201 said:
Henry! Welcome, you came to the right place! I understand your wife - my husband suffers from anxiety and I just don't understand it. Once diagnosed, my valve took about 11 years to decline to surgery level. The last 18 months of that decline was rather steep.

I did used to feel my heartbeat. I was greatly affected by extreme temperatures. I threw shot & disc in high school, and the track coach always tried to get me to run, but I hated it so much (it burned!).

My surgeon told me that my own valve would always be better than anything he could put in me, but I disagree. My body failed me with the bi-cuspid part, and then nailed me with the stenosis. I love my new valve, I am reassured by the ticking. But still...every once in a while...once or twice a month...I'll feel a flip flop, or a twang, and I'll catch my breath and stop what I'm doing and listen,

We went for a 4-mile walk night before last in the Florida evening heat & humidity. I had to slow down so my husband could keep up with me.

I read that there is a nerve that wraps around your aorta - maybe a vocal nerve? I wonder if that's what causes the tickle feeling you describe. Some patients have a chronic dry cough before surgery.

This forum is AWESOME - a great place to bounce your fears off of without "prying eyes." My husband has never read any of my posts here. I also used Adam Pick's site, but only to keep friends/family/coworkers informed of what was going on.

Again, about your wife - I'm betting she's just as scared as you are. There are two pretty easy reads out there - "The Patient's Guide to Heart Valve Surgery" by Adam Pick, and "
Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues" by Cohan, Jude, & Pimm. Both books were a huge helpt to me, my husband, and my parents.

BUT it sounds like you might be a ways off from surgery. It's tough to carry on with daily life when you know there's a serious medical issue looming. Can you find a counselor to talk to through your employer's EAP? This definitely isn't an issue to keep inside.


Meredith


Thanks for your reply. The nerve you may be referring to is the vagus nerve? In putting two and two together, this does concern me. I've had a few "vagus" symptoms. Vasovagal syncope is when you pass out from a reaction from your vagus nerve lowering your HR and BP to a level too low. When this happens your body resets itself once you pass out. I've had that happen to me 2-3 times in the past 5 years, but each time it was when i was ill with a gastrointestinal virus. I would feel sick, get up to head to the bathroom to maybe vomit or go, and get lightheaded and go out like a light, wake up on the floor a moment later.

Vagus nerve can also funk with your heart rate and rhythms. Now I worry that something with my aorta has been messing with my vagus. Could that explain the increase in PVCs over the last several years?
 

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