first posting

[sf1]

Hello, I am new to this site and this is my first posting. I am sure that if I do enough searching I can find answers to any questions I may ask here, but I guess I just wanted to write a bit about myself and my situation as a means of feeling more connected to others who have gone through and are going through similar. I will turn 33 later this month, and was diagnosed just 3.5 years ago with a bicuspid aortic valve. How it was never found earlier baffles me. And makes me wonder: did anyone see the Frontline about the FDA and drug regulation policy a few weeks back on PBS? One of the women's valves needed replacing as a result of her being on a medication that had since been deemed unsafe, PhenPhen I believe. Anyway, it is interesting to consider what may have brought on a valvular disorder later in life, while we are told it is congenital. Perhaps someone has some insight or thoughts there. Anyway, in the time since I was diagnosed, I have remained symptom-free, and am as active as I have always been. I live in San Francisco and biking has always been my means of transport. With no symptoms it is easy to push it aside and not worry too much about it. But my doctors say that I will recover more quickly and fully if I have the operation before symptoms have started. I can't help but wonder what does happen to someone who gets symptoms, what are they? More than shortness of breath? I am not going to tempt fate, and God willing I will remain as healthy as I have been right up until the surgery, which I plan to have within a few months. I guess I'll leave it there for now. Thanks and I'll be back soon I am sure! sf1

 

[PapaHappyStar]

Hi sf1,

I am the same age as you and my diagnosis was even more sudden -- first hint of disease ( murmur ) around 6 months ago and then echo revealing moderate and then severe AS. My murmur is very loud ( in fact I think I have heard it for years but been unaware it was anything unusual ), I too was very fit until 2-3 years ago, I thought my loss of conditioning was due to the birth of my son ( keeping my wife company in her binges ) and "old age" but I think the real reason was the progressive AS. I never went to a doctor for anything, felt quite good, some fatigue and some mental signs but I am only aware of this since I found out about the heart condition.

As for your question: I am fairly convinced my valve condition is congenital -- this can only be proved after surgery though. Usually when you have a non-congenital disease affecting the valves of the heart there is damage to more than one valve, in my case the stenotic valve is the aortic valve, the other valves seem normal. Another sign of bicuspid disease is a dilated aorta, there is also a characteristic ejection click on auscultation ( listening to the sound of the heart ). This is because one of the flaps in bicuspid valves sometimes overlaps the other. If you have had echos an experienced physician can interpret the images to tell you what they see. A good cardiac MRI center can produce even better slice images of the valve and can show a three or two leaf valve.

If you want a good reference you can check out this book:

"The Clinical Recognition of Congenital Heart Disease"
Joseph K Perloff, 5th ed. published by Saunders 2003

What is the condition of your valve -- is it stenotic ( blocked ) or regurgitant ( leaky )? Do you have numbers from your echo reports? Who advised surgery for you?

One needs to get multiple opinions in a disease such as this, and there are lots of treatment options to choose form -- requiring personal and lifestyle choice -- but the disease is definitely controllable.

Hope this helps.
Burair

 

[Phyllis]

**** remained symptom free and active for two years from the time his aortic stenosis was disovered by an echo after the doctor noticed a heart murmer. He played tennis and rode his bike regularly. His first symptom was fainting at the end of a long and strenuous set of tennis. He was still in denial at that time ( thought the fainting was brought on by dehydration, etc.), but had the AVR two months later after much research and evaluation by two surgeons. The valve was not bicuspid, but was highly calcified. To answer your questions - symptoms are shortnes of breath, chest pain and fainting. He only had the one incident of fainting.

 

[Ross]

As far as symptoms, shortness of breath, unusual tiredness, possibly chest pains, maybe dizziness or fainting. Your Docs are right to want it done before you develop these symptoms.

 

[MichyB]

Hi Sf...

I was probably the same age as you when they first suspected BAV but then it took a few more years to confirm as well as a few pretty weird diagnoses along the way which they are still trying to rule out.

I also wondered how I could have gone through life with this for so long and no one picked it up. For a while, the internist I went to before he retired was actually a cardiologist too and he never picked it up. I think docs tend to look at a young, vibrant, in shape female and not really thing anything could be wrong. As for Phen-fen/other drugs, from what I've read so far it seems that BAV is congenital. I was taking Birth control pills for awhile and sometimes wonder if that could have affected it, since it was only after I started taking the pills that they started finding things. It was only then, though, that they started doing echo's. Perhaps the pill could have made the valve more stenotic but I don't think it could have caused the bicuspid.

I have learned quite a bit from the people on this site. The noted site this month is the Bicuspid Aortic Foundation ... you might want to check that out as well.

 

[dcpickle]

sf1,

I know what you mean about wondering why it was never found earlier. I've had a heart murmur all my life, yet my bicuspid aortic valve wasn't detected until I was 35 yrs old. I had surgery about 6 years later (3 weeks ago.) Since I always had a murmur, I know mine was congenital. I can't help much with what may have brought it on later in life. Phen-phen I know can cause valvular disease, also many people have had rheumatic fever which caused valve damage. Beyond that I don't know.

As for symptoms, I had been taking it fairly easy and on the lookout for symptoms since my condition was diagnosed. Shortness of breath came on me so slowly I didn't know if it was a symptom or just getting out of shape. I also started having chest pain. But I didn't recognize it as chest pain, since it wasn't the sharp, stabbing pain I was expecting. It was a very uncomfortable chest tightness with exertion. After discussing it with some people here, I realized it WAS chest pain. I ended up having surgery a few months later. My echoes were also showing severe aortic stenosis (AS) and severe aortic regurgitation (AR) Chest pain seems to be a common symptom, but it feels different to different people.

As for the timing of surgery, that is always a big question. Your doctors are right about not waiting too long. Waiting too long can cause heart enlargement and other bad things you'd rather avoid. But if you're not having symptoms it's sometimes hard to believe you really need surgery! Best to get more than one opinion, for sure.

Good luck. I'm sure you'll receive lots of help here!

David

 

[tobagotwo]

Wecome to the site, SF1. You will find many people here who have been down the road you're travelling, and lots of opinions about how to go about making that journey.

Valve damage can come from many causes, only some of which are congenital. The bicuspid aortic valve is something you are born with. It can also run in families, although it doesn't always seem to. The Phen-Phen-caused valve and tissue damage is a different type of valve damage, and can happen to a tricuspid ("normal") valve just as easily as a bicuspid valve. "Normal" valves and hearts are also damaged by rheumatic fever, bacterial endocarditis (an infection in the heart), viruses, drug and steroid use, possible byproducts of atherosclerosis or arteriosclerosis, and even calcifications that are loosely (and probably inaccurately) deemed as age-related.

For what consolation it brings you, people with bicuspid aortic valves tend also to have very clean arteries.

That your bicuspid valve was only recently discovered is not unusual. It seems to be a strong pattern with bicuspid valves. I think MichyB may have hit the nail on the head, as another theme that seems to run through bicuspid valvers is that they tend to be atheletic and fit, which may lull doctors into being less concerned. Fairly often, bicuspid valves are found accidentally. Otherwise, it seems they are mostly not found until their function becomes abnormal enough to be plainly heard, or creates symptoms in their owners that lead to an echocardiogram.

This, of course, is an unexpected and very nasty surprise for you, who are suddenly told about it. It takes a while to wrap your head around this sudden, drastic change in life's game plan. Going from active, energetic adult to surgery-bound heart patient in the span of an echo and a visit for the results is a psyche-wrenching experience.

More importantly now, you're in company with people who truly do understand what you're going through. This is a good place to vent and to get help to find out however much you want to know about your valve issue. This is a good place to look into what things can be done. As you look through, I encourage you to explore valve types, but also at your age, the possibility of a Ross Procedure, if you have no aortic involvement.

The statement about getting it done before it causes other issues is generally true, but there is a balance between keeping what is originally yours while it serves you, and trading it in on new hardware.

Best wishes,

 

[Karlynn]

Just wanted to say welcome. Others have filled you in well. You are fortunate to have a doctor that wants you to be fixed before you begin to have problems. Many doctors take the opposite approach and wait until symptoms become pronounced. By that time, permanent damage to the heart is a possibility.

 

[McCln]

Sf1

Sf1

Welcome and come in as often as you need to. As to the reference to congential, that is someone born with heart disease defect. I was born with heart murmur of the aortic valve. I had it replaced over three years ago and was diagnosed with type 2 diabetes a year later, which runs on both sides of my family. I have lost 75 pounds and have been more active in the two years since that diagnosis. Of the heart murmur, it was replaced with a St. Judes' valve at age 36. It is always prefered by a very good doctor to recommend surgery before damage, it will speed up the healing process also. You are quite young, so surgery would be a good option, if needed. Hope you are in good general health otherwise, being active in bycyling. Glad that you are so active. Keep coming in and ask any quuestion you want because knowledge in heart related problems is a key to good health. Take care and come back.

 

[sf1]

thanks to you all...

thanks to you all...

who responded. I already feel much better, and know this site will be a great help. To respond to questions posed by someone (What is the condition of your valve -- is it stenotic ( blocked ) or regurgitant ( leaky )? Do you have numbers from your echo reports? Who advised surgery for you?): my valve is regurgitant. The diagnosis from the outset (3.5 years ago) was severe aortic regurgitation. How it could be severe all this time and provoke no symptoms, again, who knows. But I am certainly not complaining. I have been taking vitamin B regularly for about as long as I have had the diagnosis, having heard that it can have heart benefits, among others. As for the #s from my echos, I don't have them on hand. The Dr. who diagnosed the condition advised surgery for me (within 5 years, he said), as have the doctors I have seen subsequently, of whom there have been a few. So again, thanks to all of you who took the time to respond (I imagine you must end up repeating yourselves because of us newcomers!) and I will look forward to this exchange.

 

[bvdr]

Welcome to this site, Crystal. Before long you will feel part of this great big family. Others have addressed some of your questions so I will just limit my post to welcoming you and encouraging you to join right in. Most of us make sure we get copies of any test reports and keep our own personal files and, if you aren't already doing that, I want to suggest you start right away. It will help you keep track of what is going on with your heart and you will always have the information at hand when another member of your health team comes up with questions.

 

[Mary]

I'm glad you joined the group, SFi.
If you're having no symptoms, it's always possible that they will chose to put your surgery off as long as they can.
You might want to get a copy of your last echocardiogram so you'll have an idea of what the relevant numbers are in the event you need to compare them later on.

 

[countryboy]

Words of support

Words of support

I was first diagonosed at age 18 with a heart murmur--nothiing to worry about so I did't. In 1991 my GP sent me to a cardiologist who said I had aortic regurgeitation and a slight enlargement of the heart. He said we just need to keep an eye on it --probably would not be a problem. I am 56 years ols and retired early after being riffed in 1997. I referee soccer-all levels- and also referee football so I am quite active.

This past September I caught a cold which lasted about 4-5 days. But I kept feeling as if the cold had settled in my chest and would not break up and go away. I started waking up at night coughing and only being able to get a half breath at a time. After I had been up for 30-45 minutes I would start to feel better. This kept on for about two weeks--men can be so dumb sometimes. I told my wife I need to see the Dr. as I was tired of not getting sleep. Also, I would have shortness of breath and lots of sweating after any physical exertion.
The Dr. listened to my chest and said he wanted to run an EKG. I thougtht what does an EKG have to do with chest congestion. I asked how my EKG looked and his exact words were "It sucked". I am sending you to a cardiologist. My lungs were filled with fluid-this was causing the breathing problems and coughing. I had a bicuspid aoritic valve with extreme regurgitation.
That was 9/20/04. On 10/22/04 I had AVR in Presbyterian hospital in Dallas. I am 16 days post op and doing fine.
Hope this helps,

Bobby

 

[SHerrin Hutt]

Just wanted to welcome you! Everyone here are the greatest. You Couldn't have found a better sight!

 

[PapaHappyStar]

The diagnosis from the outset (3.5 years ago) was severe aortic regurgitation. How it could be severe all this time and provoke no symptoms, again, who knows.

The progression varies -- especially with regurgitant valves in people with good cardiac conditioning, the volume overload produced by a regurgitant valve can be handled well by a fit heart but eventually it will lead to muscle fatigue and damage if the enlargement approaches the elastic limit of the muscles. You should get a good adult congenital cardiologist or surgeon to evaluate the heart function and advise what would be the likely course of action to take. Sometimes with pure regurgitant valves without significant calcification you can get a valve sparing repair done that improves the valve geometry and reduces the leakage. Here the progression of the leakage is important -- if your valve and the root of the aorta is not showing large regressive changes then a valve sparing repair might last a long time.

I would check at the Stanford University Hospital if they are doing these procedures, but make sure you are carefully evaluated and screened for this procedure. Take a look at this article:

http://circ.ahajournals.org/cgi/content/full/106/8/900?view=full

Regards,
Burair