So.... when do you tell the family about this?

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Roxx_yer_Soxx

Well-known member
Joined
Dec 8, 2009
Messages
62
Location
Lima, Ohio
Ok, so it appears that I'm one of you guys.... A BAV'er
At this point, I've kept a years worth of doctors visits under my hat.
Not an easy feat with a wife, kids, and parents i tell everything to.

At this point, no regurge and no stenosis, 3.8 Aortic Root.

Of course "watch n wait"

If it was up to me, they'd be carting me to the Op room tonight, I am sure the surgery is inevitable, and I would just as soon it be sooner than later.

I know if I tell the family about this, everyone will look at me different...etc...

Would you bring this up to them now?
 
Yes, I would tell them now.
These are the people who love you most and who you love.
This is too hard to do on your own and it is their business to know. Of course, we don't know your family but speaking as a wife...... I'd be insane if my husband kept something like this to himself. When we married, the vows were 'in sickness and in health.........'

I think I may have a feel for why you are being private with this but your family really should be told.

IMO

(after all, you asked..... )
 
Telling?

Telling?

Yeah, why not tell them now rather than waiting until later. The conversation can be done in the context of the realities of your present situation... monitoring & waiting until the time is right.

Sure, family members may initially react differently when they hear about your bad valve and the probability of a replacement down the road, but they'll adjust and most likely carry on as normal as you move along with your life.

It sounds like you're a ways out from needing surgery, but then I'm not a medical professional either.

-Philip
 
The reason I haven't said anything yet is:

1) I am 32 (relatively young) father of 2 small kids, and I am the "athletic" one of both sides of the family.... I have not accepted yet (maybe never) that I have a "heart condition."

2) What is bittersweet for me is that my valve "looks fantastic" and "working perfect"..... BUT for some reason, my root is growing...as you all know.....if it gets big enough, that will require surgery.... but to be HONEST: If we are gonna go for the glory.... I want do it all and get it over with.

3) I hate to mention something in 2010, and it be 2015, 2020, or ??? when it's go time...... talk about painful waiting..... how would you like to wait 10 years?

And that's the thing.... if no one knows but me, then I can turn this on and off when I want. If everyone knows then I have no control over when it is thought about or talked about. I don't like that idea.
 
You know, I think, hearing your second post, I would only tell your wife. I don't think you need to tell anyone else. But someone should know about this. I can't imagine not having told my husband. My BAV went stenotic, but 27 years after it was "discovered" (hello??? why didn't anyone tell me I had a murmur until I was in my late 20"s??). I had 3 babies after learning that!! You don't have to do that! If your doctors have given you no athletic restrictions (have they or haven't they?) then it really won't impact your life that much right now. I think you need to trust the woman you married that she can learn and be by your side on this. Telling the kids? Nope. Don't need to. There's nothing going to happen to you about it soon so why upset them; they're young. Tell your folks? Why? They'll just talk (maybe) to everyone else in the family. So confide in your wife. Tell her that you are really wanting to keep this private. But she needs to know.

Just IMO!

Oh, and the more you read about your condition and the solutions, the more you will realize that premature surgery/replacement, especially at your age, is not advised. Let the technology keep developing. Keep a very careful and diligent watch on that root, and do what you're told -- have those check-ups religiously. And just hang in there. Lots of us hang out in The Waiting Room!! It's not so bad there!

Welcome to our wonderful community. Ask a lot of questions -- anything you like! We're here and happy to listen and support.

Best wishes

Marguerite
 
Great community for sure.
I am going to talk with my Cardio (hopefully soon) if there are any options I have to try to maintain this root size......(we have not discussed)
I am a exercising machine, and i have a feeling I am about to be put on the "heavy weight lifting is a no no" list.

My root was measured at 3.4 fifteen months ago, now they are saying 3.8?? who knows? I am told there is a degree of inaccuracy with a standard ECHO, and there are other ways to be more precise.

What has me the most concerned is if i really had growth like that in 15 months. If so, then man..... I'm more or less standing on the stern of the Titantic.

What's even more concerning is what if the root gets in operating rage but the BAV is still "working perfect?" To me that's a nightmare.....while we are there, please take care of that too.

And even more concerning: I volunteered for the 1st ECHO I had, and had I not.... I would know absolutely, positively, nothing about this.
 
I agree with what all said above. Your wife has the right to know and sharing the news with her will lessen its load on you. I knew I had a leaky valve since I was 19. Only a couple of my closest friends knew about my heart besides my family.

Great community for sure.
..........
What has me the most concerned is if i really had growth like that in 15 months. If so, then man..... I'm more or less standing on the stern of the Titantic.

What's even more concerning is what if the root gets in operating rage but the BAV is still "working perfect?" To me that's a nightmare.....while we are there, please take care of that too.

................

Glad that you had that echo done!

If there is anything that needs to be taken care while the surgeon is operating on your heart, he will take care of it then.

Good luck and keep us posted ")
 
Perhaps my experience will be useful. I was diagnosed with aortic regurg and a murmur in my 20s. I shared this information with my wife. That was pre-kids or when the kids were in diapers, I don't remember. Also, was told by cardios occasionally that my heart was somewhat enlarged; an "athletic heart," one called it. I led an active life -- even ran a few marathons.

Anyway, not until I was in my 60s -- nearly four decades later -- did a cardio find that my leaky valve and aneurysm had reached the stage of requiring replacement.

Not saying you will be in the waiting room anything like this period of time -- but I would recommend confiding in your wife. Important to communicate that this is not a death sentence -- rather, one is fortunate to have the diagnosis so that there can be regular monitoring and corrective surgery -- with a very high success rate - when the time comes. I think it would be better for her to know this than to be shocked one day that you suddenly have a surgical date. Just my two cents.

As for things you can do to slow or stop the enlargement, it is my understanding -- frustrating though it is -- that there is nothing in way of exercise and diet, etc. that can do that. However, of course it is very important to follow a heart-healthy diet and to exercise sensibly in order to live a good life and to be in the best shape possible when your time for surgery rolls around -- in a few years, or decades, who knows?

All best to you...
 
Hi, I would try to stop worrying, I am in the same boat, diagnosed BAV, no regurg (trivial), no stenosis, and only a 4.2cm sinus of valsalva dilation, and 4.0cm sinotubular junction with sinus effacement. Cardiologists around the world say the same thing, that this will take some time to enlarge, many years - if at all. But the probability is that surgery will be inevitible.

You're probably suffering from anxiety, same like me, and this makes your thoughts irrational, like, what if it enlarges at no time, or what if I need surgery and won't make it! However, remember these:

1. Cardiologists and professionals are not going to tell you to wait, or to try to put it into perspective and ignore it for now, if something needs urgent attention. A) In america they get paid by your insurance, not like here in UK, it's free service (here in UK they told me to put my situation into perspective and B) you can sue them for loads of money if they do or tell you something wrong.
2. The aorta is not as fragile as you think it is, it's a very robust strong vessel, that takes alot of pressure from daily activities. Have you ever took an aorta out from a pig at school? It's tough and strong! Or chewed a beef and you find a piece of vein ? No matter how much you chew it, you will never break it! True, us BAV's might have a weaker then normal aorta, which does increase our risk by around twice the normal for dissection or tear, but bear in mind that the normal risk is extremley low anyways, and at your size up till it reaches a certain size, the risk is negligible (Unless you have family history, or Marfans) - also, you are being monitored, so forget about this risk, just take care of yourself, no heavy weight lifting (not only bad for you, but bad for everyone) but otherwise, you should have no restrictions.
3. Surgery is nothing to worry about, today they perform thousands of surgeries per year, literally thousands, and only 2% mortality rate, of which you don't know their history, how old they are etc. So yes, it can be scary if you think about it too much, but most of everyone that needs surgery, do just fine - the scary thing is the lack of knowledge about all this.
4. 2% of the population have this condition, and some of them does not even know they have this condition, or if they need surgery, most of everyone do just fine.
5. Anything posted on the internet is going to err on the legal side of things, therefore, be very careful what you read, scattered pieces of information, and lack of medical knowledge will leave you extremley anxious for nothing, just follow your cardiologist advise, he have years of experience, not to tell you lies.

Speak with your wife, if any, she could be of comfort to you, and I strongly suggest you do like I'm doing, go to a psychiatrist and a cognitive behaviour therapy, and get some help, I take cipralex daily to help me with my obsession compulsive disorder (Reading too much on the internet about my condition) and a low dose of clonazepam to help me eliminating anxiety attacks, which makes my chest pressure, heart races etc, which does not do good for my brain.

Try to relax, and enjoy life and follow the advise that your professionals are given you, and talk to your family, there is nothing to hide, this is not something that's going to kill you! + Remember, probably every person in this world have some sort of defect inside them some are discovered, some are not yet discovered! Your condition is manageable, and treated successfully if it goes bad!!

God Bless.
 
Your spouce should be in the loop, that's my thought. Parents are another story. Unless you know surgery is around the corner you may need to give that one some thought. My mom called me every night at 8:00pm to see how I feel once she found out about my possibility of surgery; now that I have had the surgery it is only every other night. I know this is heavy on her mind.

Kids, well that is a tough one.
 
Hi! I'm a mitral valve girl, so my experience isn't quite the same as yours, although I was in the waiting room for 30+ years. As both a heart patient and a wife, however, I think I have at least some understanding of both sides of the equation.

First off, I think you're right that you haven't totally accepted it yourself. Telling one other person will make it "real". That may seem like a bad thing, but it really is good, especially for your mental health.

Second, if you're someday in an emergency/trauma situation, you'll probably want someone who can speak up and say, "Oh, by the way, you need to know about his heart before you (insert medical procedure)."

Third, how would you feel if the roles were reversed? What if your wife was the one with the problem and she didn't tell you?

Last, and most importantly, if your wife is like me (and a lot of other wives), she'll 1) sense something's going on, 2) imagine something worse than it is, 3) find out anyway, even if you don't tell her, and 4) when she does find out, she'll kill you "deader", faster than your heart condition ever would! ;)

I say, "Hide it from the rest of the world, if you want, but be completely honest with your doctor and your wife."
 
Hi, I would try to stop worrying, I am in the same boat, diagnosed BAV, no regurg (trivial), no stenosis, and only a 4.2cm sinus of valsalva dilation, and 4.0cm sinotubular junction with sinus effacement. Cardiologists around the world say the same thing, that this will take some time to enlarge, many years - if at all. But the probability is that surgery will be inevitible.

You're probably suffering from anxiety, same like me, and this makes your thoughts irrational, like, what if it enlarges at no time, or what if I need surgery and won't make it! However, remember these:

1. Cardiologists and professionals are not going to tell you to wait, or to try to put it into perspective and ignore it for now, if something needs urgent attention. A) In america they get paid by your insurance, not like here in UK, it's free service (here in UK they told me to put my situation into perspective and B) you can sue them for loads of money if they do or tell you something wrong.
2. The aorta is not as fragile as you think it is, it's a very robust strong vessel, that takes alot of pressure from daily activities. Have you ever took an aorta out from a pig at school? It's tough and strong! Or chewed a beef and you find a piece of vein ? No matter how much you chew it, you will never break it! True, us BAV's might have a weaker then normal aorta, which does increase our risk by around twice the normal for dissection or tear, but bear in mind that the normal risk is extremley low anyways, and at your size up till it reaches a certain size, the risk is negligible (Unless you have family history, or Marfans) - also, you are being monitored, so forget about this risk, just take care of yourself, no heavy weight lifting (not only bad for you, but bad for everyone) but otherwise, you should have no restrictions.
3. Surgery is nothing to worry about, today they perform thousands of surgeries per year, literally thousands, and only 2% mortality rate, of which you don't know their history, how old they are etc. So yes, it can be scary if you think about it too much, but most of everyone that needs surgery, do just fine - the scary thing is the lack of knowledge about all this.
4. 2% of the population have this condition, and some of them does not even know they have this condition, or if they need surgery, most of everyone do just fine.
5. Anything posted on the internet is going to err on the legal side of things, therefore, be very careful what you read, scattered pieces of information, and lack of medical knowledge will leave you extremley anxious for nothing, just follow your cardiologist advise, he have years of experience, not to tell you lies.

Speak with your wife, if any, she could be of comfort to you, and I strongly suggest you do like I'm doing, go to a psychiatrist and a cognitive behaviour therapy, and get some help, I take cipralex daily to help me with my obsession compulsive disorder (Reading too much on the internet about my condition) and a low dose of clonazepam to help me eliminating anxiety attacks, which makes my chest pressure, heart races etc, which does not do good for my brain.

Try to relax, and enjoy life and follow the advise that your professionals are given you, and talk to your family, there is nothing to hide, this is not something that's going to kill you! + Remember, probably every person in this world have some sort of defect inside them some are discovered, some are not yet discovered! Your condition is manageable, and treated successfully if it goes bad!!

God Bless.

Absolutely terrific post.
You are correct, I am a recovering anxiety person.
This is how this whole thing got started.

1) When to doc for dizziness....tried allergy pills...didn't help.
2) When back.... we did the LNG/VNG vertigo test.....results negative
3) Concluded anxiety/OCD/ slight depression (all of you folks that have any of these 3 know all 3 go hand in hand)

My general doc asked if I was happy with being on a SSRI & Benzo, or if I wanted to try anything else.....the "anything else" was Holter/Echo/Brain CT Scan..... well of course any hypochondriac like myself will do any test offered.

Family doc said "Bicuspid Aortic Valve was found, but it's no big deal, it's just different."

I took that and ran with it....
The last 18 months has been one theripist after another, various anxiety meds...etc

This is how I successfully get away with not telling anyone in my family about this... they know of the anxiety angle, so I can always blame a doctors visit on that....

Plus, I am a volunteer personal trainer at the local college I graduated from.... so I can always come up with a reason to leave alone.

Ha! I am almost living 2 lives at the moment, but I don't feel guilty as in my mind, I am saving those who love me from worrying needlessly.

The hard part for me is going to be living in the NOW while worrying about this "thing" that may/probably will have to be addressed someday.

At this point, it feels like many of my dreams/plans/goals have hit a roadblock, or pause button until a successful surgery has happened. The common sense part of me knows this is probably not a healthy way to think, as it may be 10-20 years before a surgeon will agree that it's time to do a repair.

Right now, it's hard to picture my life moving on, and myself being happy until this surgery is done and over with.
 
I understand completely what you're going through, as I'm in the same boat, don't let a tiny little deformity of a valve, or a bit of enlarged root ruin your life, trust your cardiologist, as you said, you've known about this for 18 months, and you paused your life for whole 18 months, I known about this for 12 months, and paused my life, but there is no point, why should I stop living ? So I'm trying to be rational about all this, and after all, if it starts going bad, one day, then surgery will fix it.

Move on with your dreams and goals, you don't want to grow old, look back and all you can remember is the time you've wasted analysing your condition from every little angle! Same goes to me!

Talk to your wife about it, after all, it's not serious, most probably when she asks you what did your cardiologist suggest you do, and you say, nothing, just a yearly test and one day you might need surgery, she'll probably be more angry at you for hiding this from her, something so trivial (for a non-anxious person, not for you) then you getting any pity! That will help you to move on. Remember, your problem is not the valve, your problem is anxiety! Your valve is working well, and not causing you any problems.

Also, don't know whether you're anything like me on this, but if you are, honestly stop it immediately. Stop analysing word by word what people say, example, sorry but one of the previous posts told you:

"Second, if you're someday in an emergency/trauma situation, you'll probably want someone who can speak up and say, "Oh, by the way, you need to know about his heart before you (insert medical procedure)."

And you already start getting all worried, 1, that this person said someday in an emergency, boom, your mind start thinking, aortic dissection and all the irrationality, and 2. the word 'about your heart', you start to think yeah, I got a heart problem bla bla bla...... well, really, you have a valve problem, heart is beating fine, and a bit of an enlarged root, again, nothing serious and maybe one day you will need surgery! And also, when some one tells you, till that day comes stop worrying, try to ignore them, cause if you're anything like me, you start worrying that when that day comes, you have to worry! When really, you shouldn't worry, cause today, technology, surgeon experiences and all, makes this procedure a routine, and when you need it, it will probably be a space age procedure!!

Sorry if I was a bit patronizing, but I'm angry at my own self aswell :) Don't create a problem when there is no problem! Go speak to your wife, and address your anxiety!!!
 
Roxx - I've never had anxiety or depression so I can't speak to that. A college physical revealed that I had a BAV and after basic tests (this was 1962), the cardiologist told me to go live my life and I did. I never gave it a second thought and lived 37 wonderful, healthy years before I needed an AVR. I never mentioned my BAV to anyone during those 37 years and it wasn't on purpose - I just didn't think about it. Very few BAV's actually require surgery......I'll raise my glass to your luck..!
 
Very few BAV's actually require surgery......I'll raise my glass to your luck..!

Nice story of your experience, thank you for sharing.... right now, it's not my BAV that concerns me, it's the root thing.

I know that they say 2/3rds of those with BAV never need intervention, but those people must not run in the same circles I do, as about 90% of those I know with a BAV have had intervention.

Malteser- yes... this line "Second, if you're someday in an emergency/trauma situation, you'll probably want someone who can speak up and say, "Oh, by the way, you need to know about his heart before you (insert medical procedure)." Had me cringing and panicking before I finished reading it.

I know the posters intentions were 100% good spirited, but as you know.... the mind of a anxiety/depression/OCD person processes information completely differently.

Take today for instance, I put on a great facade...but every minute....the "heart condition" or "3.8 root" is thought about..... life goes on.... but not at near the level or quality it could be.
 
Given the OCD, I figure you will be complelled to read all of these. I didn't.

I think that withholding information from you spouse is not a good idea. How is it going to look in 10 years when you say, "yeah, I've know about this for 11 years...it really is not that big of a deal....but I need OHS".

I learned of my BAV at 22 and 10 years later when I had surgery, it was a pretty big deal. In the mean time, I just kept up with seeing my cardio once a year and my Primary Care Dr about every 3 months. While all that was going on, the medical profession came up with new products and procedures.

This surgery is not a minor procedure. Relax and wait for the right time. Both you and your Cardio will know when it is time.

Scott
 
As a wife I would feel highly ticked and probably also betrayed if my husband kept a secret like this. Hopefully you will have a good long time before any intervention, but can you imagine if something happened suddenly and she didn't know? I also really think that is a big burden to carry on your own. You may feel fine about it now, but once reality hits you may find you need her support. Coming to her and saying that you found out weeks, months, years ago would probably be a painful shock to her. It will also get harder to tell her the longer you wait. I have found that once people confide in something they've been hiding I start to wonder what else they're lying about, and things start to feel like they're crumbling. Where does the truth start? You could tell her until you're blue in the face that this is the only thing you've kept from her, but she may not believe it. The other thing to worry about is that even though HIPAA is in effect she could possibly find out inadvertently from someone else. That would be very difficult.

I honestly don't think people will look at you too differently but really if they do it likely will be a bit in the beginning until people realize that things really aren't going to change all that fast. But at this point it may just be you and your wife that really need to know.

As for the numbers changing, don't think about that too much! My son has a pulmonary conduit/valve. It was stable for about 4 years (number was 2.7). Then in December it worsened to 3.3. I was a bit panicky and had assumed that his most recent visit would be the "it's time" visit. But the number stayed the same from the last visit. So it's not necessarily a steady slide, things can start and stop and go fast and then slow.

I hope you are able to tell your wife soon, and I also hope you can go many, many years with no surgery needed!
 
Try to relax, and enjoy life and follow the advise that your professionals are given you, and talk to your family, there is nothing to hide, this is not something that's going to kill you! + Remember, probably every person in this world have some sort of defect inside them some are discovered, some are not yet discovered! Your condition is manageable, and treated successfully if it goes bad!!

God Bless.

Right!! AND another thing (oh boy, you OCD, anxiety guys are gonna kill me now).... it is possible that BAV's run in the family. There has been quite a bit of discussion here on whether to have our children checked. Well, being semi-anxious myself, there was no way I could go through AVR 4 years ago without knowing if my 3 children were similarly "scathed". Our youngest, the girl, was headed to college to play sports and I paid cash for her echo... :eek2::eek2:. She came out fine to play sports, but with mild aortic regurgitation (no bicuspid -- when I saw that Mercedes Benz (3 distinct leaflets) flash up on the monitor, well, I can't tell you the relief of joy I felt). Her 2 older brothers I managed to get involved in a brief University study where they got echos for free. The oldest had a mildly enlarged heart but otherwise perfect. He lifts weights so "they" chalked it up to that. The middle, second son turned up with mitral valve prolapse. They were all 3 different!!

So there you have it!!! This is something you will want to mention to the childrens pediatrician. Yep. It's all probably fine, fine, fine.... but you are gonna want to be on top of all of it.

Sorry for that. But look. Knowledge is power. And you need to empower that wonderful. gorgeous woman you shared vows with. It's time. She'll understand that you kept it from her for awhile while you got your own arms around it -- that you didn't want to scare her. But don't wait much longer. It just isn't fair.

Honestly, this is an anxiety producing situation for all of us. Just different by degrees. We really "get it" here. Waiting is hell. It's that little edge of uncertainty that sits on our shoulders. You'll get used to it. You will. It's tough, but the more you learn about how safe you really are, waiting, day to day, the more you can trust yourself to ignore it and go on with your fantastic life.

Okay. Hang in there!! Good luck with the telling..... maybe a nice dinner out, or a pretty drive on a sunset evening, or a park bench by a babbling brook?

:smile2: Marguerite
 
Ha! I just about said something Monday....our 5 year old daughter was at school, our 1 year old son was asleep...we both had the afternoon off..... and lets just say a massage led to other plans. LOL!

This is hard..... on one hand I feel I should..... on the other hand..... my original cardio (Dr. Kelso from the TV show Scubbs look-alike) wasn't even going to tell me.
I had to make another appointment....and press the issue with him.....to he finally said "Ok, you may have a BAV, but it's common, and nothing.... your valve has served you 30 years with no issues, and it may last 30 more."

He was actually miffed that my family doc brought it up to me. True story.
But I loved that guy....and while some of you may say that you would stomp a cardio that witheld info,
I think the opposite.... I think he was right on the money not to tell me.....he correctly labeled me as someone
who would obsess over this...and that's exactly what I have done for 18 months.
 
@vbecca " You could tell her until you're blue in the face that this is the only thing you've kept from her, but she may not believe it"

Why would he, or any person with BAV, be blue in face, if he's getting checked? Sorry, but I personally think that the most important reason to tell his wife, is not because of distorted thoughts, such as turning blue in face, but more to find comfort in settling down anxiety, and understand that he doesn't have anything to worry about.

I know your intention on that comment is to encourage, however, it does not help anyone suffering from severe health anxiety and OCD.

Cheers
 
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