Living with a Bicuspid Aoritc Valve

[marka]

Hi all,

Around one year ago I visited a cardiologist after experiencing what felt like a racing heart and heavy heart beat. The echocardiogram that was carried out discovered a Bicuspid Aortic Valve. The Cardiologist said it is a common heart defect and it's nothing to worry about, it may require replacing at a later age and come back in ten years for a checkup.

After receiving that advice I pretty much forgot about it and went about life normally but had second thoughts about the ten year checkup. About a year after discovering the Bicuspid Valve I decided to get a second opinion, I visited the cardio and had the echo done first, the consultatiion with the cardio was on another day. After the echo I went home and thought I would do some research on the Bicuspid valve. When I come across Aortic Anuresym and Aortic Dissection I totally freak out. I visited the cardio and she said my valve is in very good condtion for what they can predict will last another 20 years, they cannot predict past that. She also mentioned my Aortic root is within the normal range but large for a meduim sized person like myself and I should come back every year to track it's size. I asked about Aortic Anuresym and Aortic Dissection and she said it's all fixable and I should worry about it, my blood pressure and weight is very good.

The cardio did not really settle my thoughts and ever since reading the horrible things about BAV on the internet I have been stressing out, so far for about two months, it's really starting to take it's toll.

Would anyone please explain how to come to terms with BAV? I feel like I'm not going to reach 40 (I'm 28) and it's getting to the point that I don't want to go anywhere that doesn't have good hospitals in case something blows. Maybe I don't deal with things like this very well, the valve has been protrayed as innocent but from the information I have found it has some horrible side affects that I feel are going to strike me at anytime.

Below is a copy of my echo result from the first visit to the cardo, I don't have the second report but I know my Aortic root is still within limits, 3.7, so over a year it hasn't increased. Can someone explain some of the readings more so the trivial regurgitation?

2D and colour doppler study

Right ventricle 2.3cm
Septum 1.0cm
Posterior Wall 0.9cm
LV End Diastolic 5.5cm
LV End Systolic 3.6cm
Aortic Root 3.7cm
Left Atrium 2.9cm
LV ejection fraction (est) 60-65%
Mitral inflow velocity E point 91cm/sec
Mitral inflow velocity A point 52cm/sec

Left ventricle: Normal LV size and systolic function
Left atrium: Normal
Right ventricle: Normal
Right atrium: Normal

Mitral: Trivial mitral regurgitation, no prolapse seen
Aortic: Trivial aortic regurgitation, valve appears bicuspid
Tricuspid: Trivial tricuspid regurgitation
Pulmonary: Normal

Comments:

Normal cardiac chambers and LV systolic function
Bicuspid aortic valve - functions normally

Thank you for all your help
Mark

 

[geebee]

Mark,
I just want to welcome you to VR.com. I can't be much help with BAV problems and I am embarassed to say that, even with my medical history, I have never paid enough attention to echo readings to interpret yours. However, I am sure others will be along to help so be patient.
You were smart to get a second opinion and there may be other tests available to give you exact measurements of the root but I am not sure.
I hope you find the answers that will help you to be comfortable with your situation.
Take care.

 

[mntbiker]

Hi Mark,
I am no expert, the people that are better are interpreting the echo results will be in in the morning.

I found out I had a BAV about 15 years ago. I went for annual checkups and never really paid much attention to it. The good new is if you go through regular checkups this isn't something that will suddenly catch you by surprise. Looking at the results aside from the root everything looks rather good. Trivial regurg is usually just the echo tech letting the doc know they were looking. Of course remember the previous - I am not a medical person nor am I trained in reading echos. I am just a fellow BAV'er. It is possible you will have surgery one day but it isn't that big of a deal. The surgeons that deal with this on a regular basis make it look easy.

Don't stress over it and just follow what your doc recommends. Good luck and don't be afraid to reach out here if you need someone to talk to. It's a great group of people.

 

[Lotti]

Welcome Mark

Welcome Mark

I totally agree with mntbiker.
I have just been FIXED. I was born with BAV, and diagnosed at birth. This will NOT take you by surprise, believe me. I had no symptoms whatsoever untill I was 35. Up until that point I had a check up every year, then once the echos started showing that I was getting worse (but still no symptoms as such) every 6 months. I too freaked out about the dissection thing, but my measurement at surgery was 3.7 ish and there was no need to do anything, totally OK. Basically when I started to notice my condition was when I started getting overly out of breath for something that would normally be fine. I also started getting dizzy, faint feelings. Once this started happening I was tested in more depth and referred to a surgeon. Within 3 months I had been fixed. So please do not let this take over your life, just keep and eye on it. I am glad you got a second opinion so that you can keep tabs on it. And just think in another 20 years they will have advanced in surgery even more.
And remember they fix you BEFORE you start getting really bad, not after.
Take care
Lotti

 

[OldManEmu]

Don't Stress

Don't Stress

Welcome aboard. Don't worry about the trace leakage most people have at least one valve with this. The Aortic Root at 3.7cm isn't even close to the dissection range, the risk of dissection is less than the risk of surgery until it reach?s 5.0cm, some members have had a dissection at less however this is rare. Don't worry about being near a good hospital as unless you are actually in it you are unlikely to survive a dissection. If blood pressure is managed the Aortic root it unlikely to grow at more than 1mm per year and may not grow at all. The important things are to maintain normal blood pressure, have cardio follow up to look for changes and premedicate before surgical and dental procedures. If you have any symptoms report them to the cardio, other than that enjoy your life.

 

[JimL]

I had an echo done ten years ago or so, and I was very impressed that nothing in my condition had changed in at least ten years before that. Everything was just fine. The cardiologist with whom I had the consultation wanted me to come back for an echo every six months thereafter. Whatever for, I wondered; there had been no change. So I didn't.

When my bicuspid valve did go bad, I had plenty of warning, months of warning at least. I still got fixed just in time. I still don't know what to make of the cardiologist's recommendation of an echo every six months; I still think it was excessive. I wonder if an echo every other year wouldn't have been appropriate until I experienced some symptoms.

I don't mean to give an answer to your questions, only to provide food for thought. An echo every ten years seems to err the other way, as opposed to an echo every six months. It is good for you to remain aware of your situation, and to have some kind of a regular (whatever that means) check-up so that when the symptoms do start in you will recognize them.

 

[Karlynn]

If you're young, some doctors will take a look at your age and assume everything will be fine until you are old. Some have a hard time wrapping their minds around the fact that younger people in good health can have problems with their heart.

I would do annual checkups. While valve problems may not sneak up on you, in reality, they can, because your body has a way of compensating for diminishing physical ability and "tricks" you in to thinking all is okay. An annual checkup will give you peace of mind and give you a good idea of how slow, or how quickly, situations are progressing.

 

[PJmomrunner]

Hi Mark. Welcome aboard. Your story sounds oh-so-familiar to me--as if it could almost be my own. I've made 40 years plus a few, though. I was diagnosed about a year and a half ago with a moderately leaky BAV, but my root is not significantly dialated. I have an aneurysm of the ascending aorta instead. My original cardiologist was not terribly concerned and said that in ten years or so I'd need to have my valve replaced. He referred to the aneurysm as "dialation" and never used the word "aneurysm" despite his gauging the size to be 4.8cm.

Like you, I took this info to the internet. I pretty rapidly determined I needed to see a doctor who could be honest with me and actually say the word "aneurysm," and who appeared to know all the stuff I was reading about on the internet. Honestly, I have yet to find a cardio who is up-to-speed (I'm on #4). I live in a rural area, but did consult a "big gun" in Chicago, but got no more feeling that he was up on the latest research. The Chicago guy did send me for a high resolution CT and a surgical consult, where I learned (eventually) that the resident hot-shot surgeon would happily hone his skills replacing my valve and aorta once my aneurysm reached 5cm or the valve completely blew. (While he is no-doubt a fine cardiothoracic surgeon, he is not an aortic specialist.) At that time the aneurysm was determined to be 4.5cm.

I went back to the internet and read everything I could get my hands on and started frequenting VR.com, I talked with a friend who is a pulmonologist and another who's an anesthesiologist who told me, respectively, "find someone at a big teaching hospital who does lots of valve replacements with aneurysm repairs", and "find someone fast--you don't want to be on the pump any longer than you have to be".

Your comment about being afraid to go anywhere that doesn't have good hospitals really resonates with me, because I LIVE somewhere that doesn't have good hospitals! I finally decided that if I'm to live with this time bomb in my chest, I am going to have to find someone to trust because he does so many aortas he can practically do this in his sleep! And, more importantly, he will know when it's time because he's made this determination MANY times before.

So, I've found someone who has done 300+ AVR's per year for the last ten years at a major teaching hospital. We've had two appointments and he too (like 3 cardiologists and the other surgeon) says it's not time for surgery, so I wait. He knows where I live and he knows his stuff and he assures me I'll be okay. If this guy can't judge when the time is right, I don't know who can, so I trust him. As long as I'm (like you) asymptomatic, I don't really have any way to judge for myself when the time is right, so I've got to trust someone else because I have no choice.

While I wait, I take blood pressure medication, even though my BP averaged 120/78 to begin with, because I discovered by monitoring it that my BP had dangerous spikes up to 200+/100+ (labile hypertension--see http://www.csmc.edu/3893.html) and I adhere to my surgeon's strict restrictions on raising my heartrate, lifting, pushing, pulling or doing "anything that makes you go 'unh!'". ( I don't mean for a second to imply that these restrictions should apply to you or anyone else, BTW) It makes me feel incapacitated in a lot of ways, but I get to be with my family as long as it works and while I wait, the researchers make breakthroughs and the trials and studies on new valves and coatings and materials get longer and longer.

In my better moments I am very philosophical and accept that waiting is the right thing and everything will be okay when the time comes. The rest of the time the knowledge that I have vital body parts that cannot be completely trusted gnaws at my soul. As time passes, I have become able to "file it away" most of the time. It helps immensely to read the stories and the trials of others on this website who are simply living life, for the most part as normally as anyone else doing the same. It reinforces the idea that I'm going to be okay.

So, you asked, "how do you come to terms with BAV?" In a nutshell, I learned and continue to learn all I can and I found a trustworthy surgeon and I choose to listen to him. I share my ideas and thoughts about my treatment (like the BP control) with him and my cardiologist and GP and keep copies of all reports and tests so that I can refer to them when I run across some new info and so I can bring all the pertinent info to each doctor or the next specialist, should I find it necessary to seek another opinion, or switch doctors. And, once in a while, I get to share my story with some poor newbie who's just climbed into the same boat! (sorry, so long! )

 

[marka]

Thank you for all your reponses, it's good to see other people with this condition get on and enjoy their life.

A few questions.

I'm currently stressing about this but it's slowly going away but I do suffer dull pain on the left side of my chest, it comes and goes, have you suffered this when stressing out or when something is always on your mind?

Are you more aware of your heart beating? I really notice it lying in bed and have to move around so I don't.

Do you travel? Have you hand any problems getting travel insurance?

Thank You

 

[Natanni]

Hey Mark

My husband (34 years old) had a bicuspid valve that was diagnosed as a murmer at birth. He knew all his life that valve replacement would some day be in the cards. We made it a point to do a heck of alot of living in our twenties and thirties. We played hard We have been on 4 cruises, each of them insured with Travel Care (I need to double check the name to be sure). Nathan may have caused some acceleration of LV damage by benching pressing in his twenties, but he has a very physically challanging job, and continues so even after his surgery. Nathan had periodic chest pain that turned out to be more related to reflux. He had known PVCs, with a drawn out Q wave as well ( I think!). I can not offer any info on your measurements, but many here will be able to help you there. Happy travels Ann

 

[PJmomrunner]

I've been told personally by doctors and have read as well that it is quite common to feel one's heart beating more in bed, particularly when laying on one's left side. I certainly find this to be true.

I have also experienced chest pain--more of an ache, actually--but it's not limited to my left side. It felt like an aching tightness in my entire chest or like an outward pressure--as if my chest were going to burst. I found it to usually--but not always--correlate with high blood pressure (always if I was stressing out, particularly about heart issues).

I don't know anything about travel insurance...maybe I should!

 

[aussigal]

Hi Mark...

Welcome to our wonderful family...

Good on you for researching your condition further...

Now to settle your mind you need to find the information that says your 3.7 aortic root is at a size that is practically unheard of dissecting...
Also there is no mention of a dilatation/aneurysm in your ascending aorta which is common amongst BAVers and often the bit that dissects...this is really really good news for you!

It is a big shock when you realise your BAV isnt a benign condition but many of us here went through the same thought-process and are no-longer living in-fear...

You could get yourself one of those medic-ID braceletts if it will help calm your nerves or just have a regular ID bracelett engraved for the same reason "Peace of mind". I got a regular ID bracelett but I have an aneurysm of 4.8 and a family history of early death from heart stuff. I get fixed in 9 days time.

I am not a medic...but a BAV patient...
At your measurements you seem along way off needing surgery for a dilatation or the valve. As you are young you should be out and about living life to the fullest...especially if you have none of the symptoms that tend to come with this once your condition advances..... I personally cant see any reason for you not to live life fully...

Dont waste the next 12 years worrying about the what-ifs...its possible by the time you are around 40 that you may start to feel the effects...but if you engage in a good healthy lifestyle theres also an equally good chance you will be just as well then as you are today...with good blood-pressure monitoring and a little visit every 12 months to check your measurements there is no reason to be thinking that surgery or dissection is just around the corner.

You could do something really useful by gathering-up all your "blood relatives" and suggesting they get echoes as this can be a heritable condition ...you never know you may just save a life or three!...

by the way have you checked out the http://www.bicuspidfoundation.com website?

 

[marka]

I've seen the http://www.bicuspidfoundation.com website, but to tell you the truth it sort of freaks me out.

Thanks for the kind advice it helps put this condition in context.

Mark

 

[Marguerite53]

Hi Mark. I, too, have BAV, but no aneurysm. My valve is now severely stenotic and my surgery is next week to replace the valve. I'm 52. I've knows about my condition since I was 27. I listened very carefully to the first cardio and followed instructions, got echoes regularly and always, ALWAYS took antibiotics prior to dental work, and any invasive work (to avoid bacterial endocarditis). Even made sure they had me on antibiotics when I delivered 3 healthy babies. (6#, 8# and 10.4# -- time to stop!! ). I knew something was up 2.5 years ago when I suddenly couldn't make it to the top of the stairs without feeling very winded. The progression has gone rather quickly now, if you consider 2.5 years quick. I do. I've had a full life and never did anything different. Just took care.

Again. I do not have an aneurysm. My root is fine. Only my valve is the problem.

You can work yourself into a frazzle if you read too much on the web. We've all been there. It's a freaky thing. I think it would be wise for you to have a consultation with a physician whom you trust, to give you a plan for your day to day living. I think doctors are somewhat heartless and not thorough with younger patients. They don't give you enough advice. They should. They should give you a very particular list of do's and don'ts. I think you'll find that the list of do's if very long in your case, and the list of don'ts is quite short but makes alot of sense once you fully understand your condition. You've learned enough on the web now, to be able to go back in with an educated list of questions. Your doctor can help you figure all this out the best.

Good luck and keep asking questions anytime! We're always open!!

Marguerite

 

[aussigal]

hey Mark...You can always contact Arlyss at the BAV Foundation...she is just lovely...and has an enormous ammount of knowledge in this field...
theres no need to be scared, especially now you know about it...
It just might take some-time for it to sink-in that you will be OK...

like Marguerite said...ask lots of questions were always open...

hugs
ton

 

[MarkU]

I was diagnosed with a BAV when I was five years old. I had annual checkups to monitor it, but was not given any restrictions, other than using antibiotics prior to dental procedures. Played sports all through school (swimming, football, wrestling, track, weightlifting, etc.). I knew I would eventually need surgery, but frankly didn't worry about it.

Didn't develop any symptoms until I was 47. Took me about nine months to completely recover from the surgery, but then I went back to being just as active as before. My cardiologist did suggest that I cut back on the weightlifting and do more aerobic exercise, but I was given no other restrictions. That eventually led me to training for and competing in triathlons.

IMHO, annual checkups would be a good idea. I had developed some left ventricular hypertrophy prior to surgery, which could have done some permanent damage if I had waited much longer to have my AVR.

 

[Cynthia]

I'm in the same boat

I'm in the same boat

Hi,

I just found out the same thing. On top of learning this finding, they tell me that it is leaking too. I'm totally in the same boat.

I have times of heart jumping, thumping, and racing. It sometimes lasts for days (with regularity for a few minutes in between). Then, I can go days on end with no symptoms. I'm also concerned about the future, knowing that surgery is on its way. I really am a bit in disbelief still, in some ways.

I just joined an athletic club. I'm a fainter, and now am more scared than ever to jog alone outdoors. So, I'm enjoying (oddly enough) this newfound call to get in the gym and do even more to strengthen my body. I feel the importance - NECESSITY - to get my heart as strong as possible. However, I'm really really really scared to push myself like I was doing just a few weeks ago, before learning all this. I'm going to post a question about that - pulse rates when exercising.

Anyway, folks here have been super helpful. I hope you find much help and wisdom.

God bless,
Cynthia

 

[marka]

Thanks for the responses so far.

I've noticed on my report that most of the readings are at the upper limits of adult normal range. I'm only a meduim sized person, 172cm tall and 68kg. I would have thought my aorta would be the only reading at the upper limits. Does this indicate I'm one of those persons with a heart that is not within the bell curve, I may have a larger heart than normal? And since most of the readings are high how does the the ratio of the aorta size fit in to this? Surely if you have a small heart the aorta will be smaller and so on?

What scares me the most is dissection of the aorta, I fully forgot about the bicuspid valve when I found out, it didn't bother me. Can anyone comment on the risks of dissection at various aorta sizes? Is it related to the size of the person, meaning a large person would have a large aorta to start with, and hence less risk? From what I've read BP palys a major role in dissection, and other articles say dissection is not related to aorta size? Confusing.

All I can keep in mind is the doctors are doing their best.

Thank you
Mark

 

[PJmomrunner]

These are all issues I have contemplated and never really resolved either. I, for instance, am a rather large woman at 178cm 78kg. Does that mean my aorta was larger than average for a woman to begin with? I'm actually more the size of the average man. Can I just use average man figures?

I felt (feel) the same way about the valve versus the aorta. I feel fine (or I did before the BP meds...really...I think...pretty much...yeah, fine...I guess) But my aorta's how big??? "Let's just fix that sucker right now" was my initial reaction.

At what size do aortas dissect? Well, that's just a numbers game. They looked at a bunch of corpses to come up with the numbers, didn't they? Most of them were really big...I don't know, let's say 7cm. But at about 6cm there were a bunch of dissections, the odds aren't real great at 6cm. But then they noticed at first "gee, if we operate and replace their aortas before they blow, the odds aren't a whole lot better." And a bit later, "Well, now, wait a minute, we're getting pretty good at this aorta replacement stuff. Odds are better in surgery at 5.5cm than the odds of NOT having the surgery. Ooh...and if the patient's got Marfans or a BAV, our operating is a better bet than this person's making it through the year if we don't at 5cm!" And a few surgeons know they're real hotshots--"the patient's odds are better with me than without me at 4.5cm."

I like to compare the aorta to a snorkel. The first bit from the mouthpiece upward is the ascending aorta and its made out of that rubbery flexible stuff. It's designed to expand and flex to take a beating as it receives the blood being forcefully expelled from the heart. When it gets to a certain size it's no longer pliable enough to absorb the force of the blood pressure. That's why it's so important to control the BP.

All I can keep in mind is the doctors are doing their best.

I think this is key. And it's why we have to seek out someone whose best can reasonably be relied upon.

 

[Gemma]

Hi Mark,

My boyfriend Jim is 29 and he had his bicuspid aortic valve replaced when he was 26. His problem was only with his valve, it was both leaky and stenotic (where the opening isn't wide enough so the heart has to pump harder to get blood through it).

Have you been told you have BAVD? Just asking as it's possible your valve is also your only problem. I don't know anything about aneurysms I'm afraid or what a normal sized aorta should be, but it could be your worry about that side of things is unfounded.

As to how to cope with it, you just do. Getting regular echos is good advice, but try not to freak out about it. Although there are a lot of people who have valve replacement surgery at a young age, there are also a lot who have a long wait before it needs replacing.

The important thing is to get as much information as you can about your own condition. If you notice new sypmtoms, make a note of them and tell your doctor or cardio. Jim used to get stabbing pains in the left side of his chest at night - that's what sent him to his doctor and led to his diagnosis. His heartbeat was very loud and you could really see his pulse in his neck too - that was caused by his heart being very enlarged.

I'm not sure if any of this is of any help, but I hope so! If there's anything specific you'd like to know just ask.

Gemma.