Hi! I'm new here... New Valve Too Small...

[karen14]

I'm 46 years old, born with a bicuspid aortic heart valve (2 leaflets instead of normal 3); and Marfan's Syndrome, a connective tissue disorder. I eventually became weaker and weaker, with the cardiologist finally telling me that I needed the surgery or I would die.

Just before the valve replacement surgery, they also found my aorta itself was enlarged due to the constant years of excessive blood flow pressure on it (the same thing that killed actor John Ritter, only his wasn't caught, and sadly, ruptured; God rest his soul). I personally believe they specifically looked at my aorta due to Ritter's cause of death, as this was often over-looked previously.

So I had the aortic valve replaced with a metal one, as they advised that pig valves wear out faster and are usually put in older people (due to a higher risk of death in a 2nd surgery). They also did a graft on my aorta itself, strengthening it, for the above mentioned condition.

Soon after surgery I learned the valve is still putting out too much blood. Like 3cm more than it should be. How could this be? I was very sad to hear this, as I had put off having the surgery as long as I could (10 years +).

Well I'll be having a cardio exam late February & will let you know how I'm doing. It is my hope that my valve will "adjust" itself, with decreasing blood flow. I just can't imagine going through that surgery again.

 

[catwoman]

Karen:

Welcome!!

When was your surgery?
Sounds like you have a mechanical valve (rather than "metal"). I'm not sure what you've been told about your valve putting out "too much blood." Do you have results from your last echocardiogram that you can post? Someone else here may understand your terminology, but the echo results will sure help.

I have a mechanical in the mitral position. My late father-in-law had his 2nd MVR 10 years after the first one; he had a porcine valve both times. His AV was replaced when he had his 2nd surgery. We've always suspected he had Marfans, but I've been unable to confirm that. His surgeries were in 1978 or 79, and 1989; he passed away (cancer) in August 1994. I never got a response from his surgeon's or cardio's offices when I inquired as to reason for his first surgery.
I do have some regurgitation around the perimeter of the valve, but I'm doing fine. I'm not sure if that's what you're referring to; some people do have leakage around the perimeter of a replacement valve, and it doesn't matter if you have a mechanical or tissue valve.

 

[Nancy]

It sounds like your heart before surgery, was forced to pump extra hard to move blood around your body. And the fact that surgery was put off for some time just added to the extra work. Sometimes after surgery when hearts have become enlarged due to the extra work they have had to do, they continue to pump forcefully for a time until they remodel. My guess is that they will give you some medication to reduce your heart's workload and give it a chance to relax and remodel itself.

I bet when you are a year out from surgery, things will have changed a lot.

 

[Duff Man]

I'm not sure what it means to have the valve put out too much blood. I might recommend posting a summary of the echo report.

 

[ALCapshaw2]

Karen -

Your statements ("New Valve Too small" and "the valve is still putting out too much blood" contradict each other. Also, blood is not measured in cm.

It would help if you obtained a copy of your Echocardiogram Report which Medical Providers are required to make available by law but note that they may charge a copying fee.

'AL C'

 

[karen14]

THANK YOU for replies! I had my AV surgery & Aorta Graft in late July, 2008.

This is exactly what my cardiologist told me, simply that the blood from the mechanical AV is measuring too high (not leaking). Actually I'm due for another echo soon, so I'll ask for a copy of that one. So I guess this next echo will tell more!

On another note, I do hope that it's true that my heart/AV just needed time to remodel! This is a very hope-giving post! Thanks!

 

[Marguerite53]

Hello. What a lovely smile you have! Welcome to our wonderful community. We are not doctors here, but I must say, I go along with the positive spin on your heart remodelling itself in time. Be patient and think positive -- it can't hurt your heart to know that you have faith in it!!

Please feel free to ask us anything. Each time you have a different kind of question, be sure to start a new thread so as many people will see it as possible. We are an active bunch and someone is almost always around to say hello.

There is news from the VR.com founder that our site may be down for some serious work in a few days, so don't give up the ship if you find that suddenly we've disappeared. We'll be back! And just in time to review your latest echo report.

Most of us collect our reports. You can certainly ask for your past reports from your doctors. It is fun and interesting to compare numbers and try to learn what everything means.

Good luck to you and keep us posted.

Marguerite

 

[Ross]

THANK YOU for replies! I had my AV surgery & Aorta Graft in late July, 2008.

This is exactly what my cardiologist told me, simply that the blood from the mechanical AV is measuring too high (not leaking). Actually I'm due for another echo soon, so I'll ask for a copy of that one. So I guess this next echo will tell more!

On another note, I do hope that it's true that my heart/AV just needed time to remodel! This is a very hope-giving post! Thanks!

Karen I wouldn't fret too much about it. Echoes aren't the best tool in the world for measuring such things, but also, there is no real need to do a catheterization to confirm either.

Most definately get your own copies of your medical reports and keep getting them everytime they are updated. It makes all the difference in the world to people like us. When you do get the echo report, post the information and we'll be able to give you better feedback.

I agree that you'll most likely be fit as a fiddle within 12 months time. It takes the heart quite a while to remodel, but so long as it wasn't left go for too long, it should remodel without much problem. I wasn't that lucky myself. In fact, I'm an aortic aneurysm rupture survivor. No, you didn't want to go there!