Just got the news: BAV (Age 40)

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thanks to all of who have chimed in here on this thread, can't explain how nice it is to talk to people about it who have an understanding.
 
HenryCT;n856218 said:
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.
I think if you were going to have open heart surgery you might be telling your friends about it. Once I knew that surgery was likely a couple of years away I certainly told our friends. Not strangers though.

I've been doing some more research into the prevelance of BAV as I'm really intrigued now that I've said I don't believe it's 2% of the population. There's quite a few differeing reports. Here's one: http://www.rightdiagnosis.com/b/bicuspid_aortic_valve/prevalence.htm "Ophanet, who are a consortium of European partners, currently defines a condition rare when if affects 1 person per 2,000. They list Bicuspid aortic valve as a "rare disease"" - 1 in 2,000 is 0.05 % ! Later it says here: http://www.orpha.net//consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=1244 >1/1000 which is more than 0.1%. And here: http://circ.ahajournals.org/content/111/7/832.full it says 0.9 to 1.36%

Btw autsim isn't always obvious, except when the person is profoundly autistic. So many parents of autistic children complain of strangers who looked ascance at their autistic child, thinking they were misbehaving when they were simpy being autistic.
 
It's certainly interesting to think about. I saw an article on Google scholar recently opining that the actual prevalence may be understated given that some "bicuspid" valves can look very tricuspid or be almost impossible to tell from true bicuspid valves?

That goes back to my original thought re: not necessarily needing a true bicuspid valve to still be at risk for aortic complications. That's the reason, I think, for the monitoring of family members even if they have a "normal" valve.

I know a lot of the studies on prevalence are old, so it would be interesting to me to see a newer study that also specifically states how they define BAV. I'm no expert. ..so maybe this already exists?


And Henry, I can't say I understand being a breadwinner ( both my husband and I work) but i can certainly empathize as to why that would be scary for you. Try to take a step back though and realize you will be monitored. That is a good thing!
 
Henry et al:
One coping mechanism I have used, in response to getting differing opinions here there and everywhere is to obtain every medical record. Usually if you indicate it is for 'treatment" instead of for "personal" use - they are free or charge nominal mailing. It is necessary to request the hard copies and CD's separately. EKG's are seperate from echos etc. I get the entire medical record. It does two things, first I can be informed about my status and become more knowledgeable as necessary and second, I can track my rate of decline. I was diagnosed 15 years ago with BAV. I discovered my own "new" murmur and informed my doc who was not concerned. About a year and a half later I told him it was worse and they sent me to a cardiologist who said Aortic stenosis, probably BAV but you're fine don't worry. Get checked every two years, then it was every year now it is every 6 mos. It didn't start to look like I would need surgery until 2012. So I now have all records dating back to 2010, including Drs notes etc. There is a resource that has proved invaluable - the ACA/ACC Guidelines that were update in 2014. (American Heart Assoc./American College of Cardiologists, sorry I haven't figured out how to do links yet.) You can find specific parameters for the "hallmark" measurements gleaned from your echo. I assume you may not know about this because you haven't talked about any numbers like your AVA, mean pressure gradient, Maximum aortic velocity, or whether they found ventricular hypertrophy. Forgive me if I am covering ground you have already covered. I have historically found it tremendously helpful to know where my numbers fall on the spectrum of moderate to severe. Although currently I am just confused because I am mostly asymptomatic, my numbers are not quite severe (depending on whose numbers are used) and reputable cardios/surgeons are recommending surgery in the next couple of months. But I digress, sorry. They use numbers AND symptoms to decide when to intervene. I have learned so much from tracking my numbers and reseaching the variables. On another point, the only thing all the Drs have have been unanimous on is to have my children tested. Both are free of BAV, at least so far. I hope this is useful for you. Researching is how I manage my anxiety. But I am kind of envious of pts. who pick a Doc or facility and just trust. Good Luck, Bonbet
 
I forgot, one more thing: In my experience they like to use MRI's and Gated Cat Scans as the gold standard for measuring the aorta. But because of the expense and radiation they wait until there is mild to moderate enlargement as seen via the echocardiogram. Once there is evidence of enlargement on an echo, it is probably a good idea to get a baseline accurate number via MRI or CATSCAN, so enlargement, or not, can be monitored. Those arortic numbers should be on your echo. Bonbet
 
Bonbet;n856225 said:
I assume you may not know about this because you haven't talked about any numbers like your AVA, mean pressure gradient, Maximum aortic velocity, or whether they found ventricular hypertrophy. Forgive me if I am covering ground you have already covered. I have historically found it tremendously helpful to know where my numbers fall on the spectrum of moderate to severe.

Yes, I do not have that information as of yet. But I will ask for it in my follow-up next month. When I called and asked about the heart, left ventricle, aorta, he said they all looked to be normal. But there were no specifics, and I didn't know enough to ask at this point, this is all still only a few days fresh to me.

Today I woke up feeling better than usual (my main issue is that I haven't felt "right" in about 2 years, although I have some days that are better than others), but around 10:30 AM I was whacked with what felt like a big PVC. This one was a little unusual as it actually hurt a little, felt like my heart was squeezed for a second, lost my breath, and then it resolved. I have read that PVCs can sometimes be a little painful, if they are delayed a little and pumping more blood in the rebound. Having said that, as I explained to my wife, it felt as though if whatever that was continued I would have been on the ground, but it only lasted a second.

I have an "event monitor", but its useless as it makes a loud squealing sound for 30 seconds when you turn it on, and you have to press it against your bare chest. 2 reasons why I can't bring it to work and I don't. Even if I were home, this was over in 1 second. My worst PVC moments have only lasted about 10-15 seconds, not nearly long enough to fire up the event monitor. Sometimes I go for weeks without one too.
 
A couple of other points and/or questions:

When I did my stress test, they did the Bruce protocol, but they did it strange. They did it in 2 minute intervals. I was able to get to the 4th stage, which was something like 4.5 mph at a fairly steep incline. I was almost to the 5 mph but we stopped there because my HR reached 179 bpm (I'm 40 and my max was listed at 180). The stress test I did 2.5 years ago, when I was in better shape, I was in the 5.0 mph phase and it was 3 minute intervals. I think I made it 18 minutes. Unfortunately due to my fitness level and the different protocols it's not really apples to apples.

I also want to know about slow heart rate. My heart rate seems pretty slow. For instance, as I sit at my desk at work, it can be sitting at anywhere from 56 bpm to 65 bpm. There are times where I have felt not well and it's at 56 bpm. Sometimes its as low as 58-62 when I am standing up and still. When I go walking it gets up to 80-100. Running gets me right into the 120+ range, and as you can see I hit 179 during the test.

Walking up stairs, hiking uphill, or jogging uphills has always been harder for me than it seems for others, but its hard for me to tell know if my breathlessness climbing is from anxiety/panic or from the exertion. I'm overweight (235 pounds, down from 255 pounds, and aiming for 210), so that factors in.

My BP was 118/78, and it has been 120/70, 120/80, and 130/80 depending on the day.

When I was running in the stress test, I believe he said it got up to 160/80.
 
In case no one answered: the echo would pick up an aneurysm. They always look for that at the end of the test.

My BAV had a torrential leak and I never had any symptoms. Sure, palpitations occasionally, but nothing that alarmed me. I've known about my heart issue all my life so I've always been pretty relaxed about it (old news, nothing to bother about). That is, aside from the couple of months post-op when I didn't trust my heart not to go on strike. ;-) What you've described sounds a lot like anxiety. Don't take this wrong, but it's also a good idea to get some life insurance so you know your family will be taken care of if you have an accident (a more likely scenario than your BAV suddenly causing death).

It's definitely good to question doctors and make sure they address your concerns. The trick is balancing that with the anxiousness over your diagnosis.

BTW, your HR and BP observations are interesting. My HR is lower now (~65) and diastolic BP is higher (sometimes I make it into the low 70s!) post-op. No doctor ever indicated to me that either was affected by my BAV/regurgitation, but intuitively it makes sense (to me) that diastolic BP could be lower with a severe valve leak. Lower, but still safe.
 
Henry, I suggest that you ask for a copy of your echo report. I think it is extremely unlikely that the Dr. would miss signs of regurgitation or stenosis, since that is what they would be primarily looking for, but it may give you some peace of mind to see and get to know some of the numbers. Then you can see for yourself whether things like your ejection fraction, valve area, valve velocity are within norms. I will caution that echo reports vary in what they measure and even how some measurements are labeled, and the reports can be difficult to understand but the Valvular Heart Disease Guidelines can help sort out a few key things to look for, available here: http://content.onlinejacc.org/article.aspx?articleid=1838843. Note it can be downloaded as a pdf and don't be intimidated by it's size, just go to the sections on Aortic Stenosis and Aortic Regurgitation. The report should also have measurements of your ascending aorta and aortic root. The echo is not the most accurate way to measure for an aneursym but it's good enough to tell if there's a problem, and if there is a follow-up CT or MRI is generally ordered.

Re. your concerns re. possible loss of income. Tomorrow is not guaranteed for any of us. Buy life insurance!
 
I should probably start another thread, but I'm just curious about life insurance with a BAV? How much more are premiums? Does anyone know? Or have issues getting a policy because BAV? I have a large policy through work, but i fear it is not portable.
 
I should probably start another thread, but I'm just curious about life insurance with a BAV? How much more are premiums? Does anyone know? Or have issues getting a policy because BAV? I have a large policy through work, but i fear it is not portable.
I wasn't thinking. I bought my life insurance long before I was diagnosed. I expect the BAV diagnosis may lead to higher premiums or denial of coverage. Still, this article provides some good advice and reason to think it may not be impossible: http://www.insuranceblogbychris.com/life-insurance-approval-after-heart-valve-replacement-surgery/
 
I experienced a bad case of anxiety from skipped beats before I knew of my bicuspid aortic valve that was moderate-severe at the time. Basically, i could feel my heartbeat before falling asleep and I could feel my hearbeat actually feel like it stopped for what seemed like an eternity but was just a second or so, then it would double beat and go on as normal for as few as ten beats or as long as a minute or two. Because of this I kept thinking I should go to the ER , even getting up and dressed. This went on for over two days without any sleep, and I was a mess.

I had an echo and EKG before this, and never got the results. New doctor told me if the results were bad the ER doc would have told me, so therrefore there was nothing wrong with my heart at all. He got me to take clonazepam for the anxiety and it definitely helped. However, he did look into the results and the results showed moderate-severe stenose of a bicuspid aortic valve.

Afterwards, seen a cardiologist and had a stress echo done. Her analysis was even with a BAV with near severe stenosis my heart was actually keeping up to exertion quite well with no damage and that any health problems being experienced had to be related to something else.

She also explained to me that skipped beats by itself wasn't any cause for concern as there was no evidence anything bad happens in correlation to them. afterwards I googled skipped beats and everything I could find seemed to support what she said. So from that point on I never worried after feeling my heart skip beats again.

But before that clonazepam helped reduce my anxiety each time completely.
 
AZ Don;n856243 said:
I wasn't thinking. I bought my life insurance long before I was diagnosed. I expect the BAV diagnosis may lead to higher premiums or denial of coverage. Still, this article provides some good advice and reason to think it may not be impossible: http://www.insuranceblogbychris.com/life-insurance-approval-after-heart-valve-replacement-surgery/


Fortunately for me, I was also able to get life insurance a long time ago. I'm 40 now, but I think I was around 27 or 28 when we had our first child and I elected a good sized life insurance policy (term). It's about 5 times my annual income, and I believe it's a 30 year (good through age 58). It's possible that it's only a 25 year, but I think it's 30, and it auto-adjusts each year for inflation. I have a feeling that it would be tougher now with the BAV.
 
Fundy;n856247 said:
I experienced a bad case of anxiety from skipped beats before I knew of my bicuspid aortic valve that was moderate-severe at the time. Basically, i could feel my heartbeat before falling asleep and I could feel my hearbeat actually feel like it stopped for what seemed like an eternity but was just a second or so, then it would double beat and go on as normal for as few as ten beats or as long as a minute or two. Because of this I kept thinking I should go to the ER , even getting up and dressed. This went on for over two days without any sleep, and I was a mess.

I had an echo and EKG before this, and never got the results. New doctor told me if the results were bad the ER doc would have told me, so therrefore there was nothing wrong with my heart at all. He got me to take clonazepam for the anxiety and it definitely helped. However, he did look into the results and the results showed moderate-severe stenose of a bicuspid aortic valve.

Afterwards, seen a cardiologist and had a stress echo done. Her analysis was even with a BAV with near severe stenosis my heart was actually keeping up to exertion quite well with no damage and that any health problems being experienced had to be related to something else.

She also explained to me that skipped beats by itself wasn't any cause for concern as there was no evidence anything bad happens in correlation to them. afterwards I googled skipped beats and everything I could find seemed to support what she said. So from that point on I never worried after feeling my heart skip beats again.

But before that clonazepam helped reduce my anxiety each time completely.


A lot of similarities, Fundy!

I can hear my heart beating, and/or feel it beating, but that comes and goes. I can also hear it in my ears when I lay on my sides at night with my ear against the pillow. This freaks me out, but ironically, I am also a side sleeper, so I walk a fine line. I lay on my back and/or half on my back until I get so sleepy that I turn to my side without being aware of it as I drift off.

I presume this is all mental, because I remember feeling or hearing my heart beat in the same manner when younger, but I never cared then because I never had any doubt about my heart. Now there have been some doubts, so I notice it more.

I agree about the skipped beats, especially the single ones. I just assume those happen. What does worry me is when the heart goes into an arrythmia for a period of time, just in the event it doesn't come out of it! These also seem to be more prone to happen when I am having high anxiety.

I also get jolts from time to time that I feel go through the center of my chest like electricity. Not painful, but it makes me jerk a little, like my head and neck. These seem to happen when my anxiety is very high only, and are mild and infrequent.

I'm still investigating hormones as well. For someone who had zero anxiety issues for 38 years, and then have them come on so suddenly and heavy, there could be more to it than just mental. For instance, my total Testosterone was in the 200's (it should be 500-800 for someone my age). Low T is associated with anxiety and depression, and so I am taking clomid (through an endocronologist) in an attempt to boost up T production to see if that improves my anxiety symptoms.

I am also going for a sleep study next month, to investigate for sleep apnea.
 
I also was experiencing quite frequently something like described in this article on exploding head syndrome while almost asleep.
http://www.dailymail.co.uk/health/article-2620837/Is-exploding-head-syndrome-reason-sleep.html
Basically experiencing a sudden explosion seemingly from within my head, sometimes my entire body would jump as if shocked. Never felt anything electrical.

Also, I don't ever remember one instance of either skipped beats or the sudden explosion after I had my valve replaced. But I hardly ever feel my hearbeat while going to sleep after it either. Occasionaly but not often.

But previous to the replacement, i also felt a lot better after making a few changes. Such as I changed from drinking many, many cups of coffee each day to drinking green tea instead. Swapped cola for concentrated fruit juices, and swapped sugary junk food for fruit and salad. I also did deep breathing after waking and before sleep, as well as anytime during the day that I felt I was getting a bit of stress or anxiety. I quite often wore ear plugs while sleeping. Have you tried those, I found I got a much much better sleep, one particular type was so good I often slept right through my alarm.

My sleep seemed to improve and anxiety and muscle aches were significantly reduced.
 
Interesting point about the life insurance. I got a term policy nearly 15 years ago, and I'm sure if they asked about heart issues I told them about my murmur (i.e., moderate-severe aortic regurgitation). They did a cursory physical with blood tests and stuff. My rate is pretty darn cheap, so I'm pretty sure I'm in the "low risk" category.

Remember, surgical mortality runs 1-2% without complicating factors.
 
I had life insurance through my prior employer. It was about 6 times my salary. Luckily I kept it after I left in 2003. It's only about 2 times my current salary. I tried to get a policy through my current employer a few years ago. My doctor had to write a report. At the time I had mild stenosis and insufficiency. I was rejected. Now have moderate severe stenosis. The policy I have won't even pay off my house.
 
Fundy;n856247 said:
She also explained to me that skipped beats by itself wasn't any cause for concern as there was no evidence anything bad happens in correlation to them. afterwards I googled skipped beats and everything I could find seemed to support what she said. So from that point on I never worried after feeling my heart skip beats again.

I have skipped beats all the time, often every 30 seconds or more when I'm trying to sleep. I know they aren't a cause for concern, but they still unnerve me. I don't worry about them in the long term, just in that split second when my heart feels like it's on pause. You'd think I'd get used to it, but it just drives me crazy.

As for life insurance, I had a rep at my old job tell me that I had no chance of getting it. I was 26 at the time (2 years ago). I told the rep that I didn't think I needed it, but she gave me all the info and asked me about my medical history and such. She was surprised and told me she didn't think there was any way they could cover me. I was expecting a high rate rather than denial, but I guess it doesn't matter in the end.
 
I'll have to wait until my appointment with my cardiologist in mid-July ... but over the phone he had told me everything looks normal.

Spoiler Alert: I have medical anxiety / hypochondria

Now that I got that out of the way, I am going to tell you why I think my cardiologist is either wrong, or lying :)

Up to age 38, I really had no problems. I did have gallbladder attacks for a few years (once every few months) and finally had it out, and despite being very scared about the surgery, it went well and I recovered and went back to normal living and exercising. In fact, I even got into CrossFit and got into great shape!

But suddenly, 2.5 years ago, I got this random arrhythmia during stress that lasted 5-10 minutes. Fluttering, dizziness. Thought it was a heart attack, the whole 9 yards.

Over the last 2.5 years, I have had all kinds of nagging symptoms around the heart. Skipped beats, a number of other arrhythmias that lasted anywhere from 10 seconds to a minute.

I also have this issue where when I exercise now, hours afterward I feel "sore" in the area around or just above my heart. This had been happening before I even knew of the BAV. In fact, at that time, my prior cardiologist had been saying I was 100% fine.

I also notice that I can't run like I used to. At one point, I could run a 10 minute mile relatively easily, and even was running a mile in just under 8 minutes. A 5K would take me 18-32 minutes. Now, I get fatigued when I run a mile. Having said that, I am also now afraid to max my heart rate ... for fear my little BAV will not be able to keep up.

I get winded when I go upstairs. Maybe I always did ... but now I am scared of it. Again, I was feeling this symptom before I knew I had BAV. So when I heard I had BAV, it almost seemed to explain everything to me ... but my cardiologist said that I was in good shape and the symptoms were NOT from the BAV!

This soreness in my upper chest area after exercise, the skipped beats, the arrhythmias, the feeling my heart pounding at times, the fatigue when ascending ... I feel like all of it has to be a sign. Perhaps I do have regurgitation, and the doctor just didn't see it (or he considers moderate regurgitation to be "fine")?
 
Hi

HenryCT;n856459 said:
I'll have to wait until my appointment with my cardiologist in mid-July ... but over the phone he had told me everything looks normal.

Spoiler Alert: I have medical anxiety / hypochondria

Now that I got that out of the way, I am going to tell you why I think my cardiologist is either wrong, or lying :)

Up to age 38, I really had no problems.

well I'm going to toss in why he may be less wrong than you think.

Before my 2nd OHS (as I really don't recall much before I was 9) I had arythmia and palipations from time to time. Sometimes when riding my bicycle home from work (17Km average speed 27Km/H hilly area) I would get them so long I'd have to sit down and wait it out rocking from side to side because of the heart beating like a crazy thing. There were no mobile phones back then and I just assumed that if I got really faint I'd flag down a car and ask to get a lift to the hospital.

My surgeon (back then we didn't have these middle men) thought it was "acceptable" and just asked me to keep observations on duration and dates.

My repaired valve lasted another 7 or 8 years and after my homograft (done in 1992) I had them through out the rest of my life till now (with a ATS bileaflet inserted in 2011). They seem to be unrelated to performance of blood flow (which is what the valve is for btw) but related to something else (not treated by changing the valve).

Everyting is about risk assessment and managment in cardiac surgery. Will you be more likely to die in surgery or without it: that's the only question they ask.

A good surgeon will only consider your safety, not your comfort, not your mental comfort. I'm sure you can find a butcher who will do the job no matter what if you push hard enough, but then you may just end up badly injured from the surgery (and yes my friend that happens).

My advice to you (as one who has been dealing with anxiety for my self and helped friends who have it) is to assume a stance where you know that only YOU really have your best interests at heart. When it comes to your anxiety you actually do have the ability to control and direct it. You are indeed captain of your ship and with consistent application of willpower you can master it.

Mastering it does not mean the feeligns of "what if ..." go away ... it just means like the captain of a ship you tell the anxious crew to shut up and follow your orders.

Best Wishes
 

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