Anyone have any answers?

[rizzie]

Hi everyone, this web site seems great!
I am a 21 year old female with an aortice valve regurgitation and for some strange reason the doctors along the years have never really told me what will or should happen. I am trying to find out any info about this, and maybe about pregnancy with AVR. I plan to have children within a few years and am a little worried, because I read some of the stories, and they all said that after a few pregnancies their valve leak got worse and they had to have surgery! So please if anyone knows anything about what really happens throughout the years please e-mail me. I am sick of hearing the doctor say your okay for right now, see you in a year. Oh and I think I have been having palpitations for the last 5 months, (but haven't been to the doctor in a year) does that have anything to do with AVR? I also get bad migrains.
Thank you all for your help

 

[rcatalano]

I don't have alot of answers, I can only tell you my experience. I was told I had aortic regurgitation when I was 22 years old. They said it was a minor leak and may never amount to anything, but I should see a cardiologist annually.

9 years later, the cardiologist said the lead was rapidly getting worse and my heart was enlarging - time for surgery. I had no overt symptoms. I was born with a bicuspid aortic valve.

I don't think there's anything you can do about it except see your cardiologist every year. Maybe keep a record of the results of any exams - my doctor showed me how the results were the same every year until they suddenly went downhill.

Just being aware of your condition is your best defense. I was told if the valve starts to deteriorate, it will do so slowly. It won't suddenly stop functioning and put you in danger. If you find yourself short of breath more than normal, see the cardiologist. Otherwise, see him annually (or whatever schedule he thinks is appropriate).

What I don't know is if surgery is inevitable. It may be possible that the regurgitation will never bad enough to warrant surgery, but I'm not sure of that.

I didn't experience any migraines or palpitations - I don't know if the valve has anything to do with it or not.

Good luck and try not to obsess over it (I know, easier said than done).

 

[Nancy]

Hi rizzie-

Welcome to the site. Rob has said some very important things.

No one can tell you if or when your valve will deteriorate. It happens fast to some, slow to some and stays the same for some.

As Rob said, keep all your appointments, and make sure you have a good cardiologist.

In addition to that please do research all about your condition. It helps to understand what is going on in your body. When you research it, you will see what symptoms to look for. Any time you feel something different going on, such as irregular heartbeats, make sure to get them, checked out. Most are innocent, but it is impossible for most of us to diagnose just what arrhythmia we have, and some are not innocent. Your health will depend on a combination of you being careful with your health, and your doctor being careful with your health.

Here are some reference sources to get you started.

Texas Heart Institute Home Page
http://www.tmc.edu/thi/index.html

Heart Anatomy
http://www.tmc.edu/thi/anatomy.html

Valve Surgery
http://www.tmc.edu/thi/vsurg.html

Valve Diseases
http://www.tmc.edu/thi/valvedis.html

Heart Valve Types
http://www.tmc.edu/thi/valvetype.html

Diagnostic Tests
http://www.tmc.edu/thi/diagtest.html

Heart Related Glossary
http://www.tmc.edu/thi/glossary.html

Frequently Asked Questions
http://www.tmc.edu/thi/question.html

 

[LoraW30]

Another suggestion might be to keep a journal and write down everything that seems unnusual or out of the norm, especially if your having palpitations. It will help the doctors understand more about what might be going on.
Lora

 

[joy]

Hi Rizzie, I don't know about aortic valve replacement, as I had my mitral valve replaced, but I do know that pregnancy with heart disease is NO fun at all. Before getting pregnant, I would have a discussion with all of your doctors.

I didn't know I had heart problems when I became pregnant with my second son, and it landed me in a coma for 10 days until they could open my valve up enough for me to make it until I was able to get an MVR. The reason that pregnancy is so tough is because when you are pregnant, there is twice as much blood flow through your body, and it is already a lot more work for your heart, let alone being pregnant with heart problems. Don't get me wrong, it can be done, but I recommend you talk to your doctors about it first. I have my story on the personal stories section of this site.

 

[KimC]

Hi,

Check out the thread below called "pregnancy cause valve surgery?" for more info on this topic.

I agree, pregnancy and heart disease is very hard on you. I never felt worse in my life but in the end it was worth it. I adore my children.

Make sure you have a solid support system in place before considering it.

Best,
Kim

 

[Bunny_Rabbit]

Hi Rizzie

I had moderate Mitral stenosis that required a Valvuloplasty last year. I'm now 30 (yuck) and just recently asked my doctor about pregnancy. She told me that I could now get pregnant, HOWEVER it would have to be under the care and supervision of my cardiologist. She also went on to tell me that if I had gotten pregnant BEFORE my Valvuloplasty, I most likely would have died.

I still have mild Mitral Stenosis, Mitral regurg., Tricuspid regurg., Aortic regurg., and Aortic sclerosis. Dunno if that helps.

You should definately speak openly with your doctor about it.

Take care.