What is Congenital Heart Disease
Congenital heart disease is heart disease in the newborn, and includes congenital heart defects, congenital arrythmias, cardiomyopathies, and hypertrophic cardiomyopathy (HCM). Con...
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Leaky Heart Valve???
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I am 39 yrs old and have had a Congenital Heart Murmur since I was an infant however recently I went to the doc and he said that my murmur had gotten worse and it was in his words:"Significant" and he warranted an Ultrasound so I went for that and it showed a "leaky heart valve" he did not really specify which valve was leaking, but now wants me to have a Stress test, and he is talking possible Open Heart Surgery? I have had the test scheduled twice and backed out of it, I am afraid of the results. Has anyone had this same condition? What did you end up having to have done?
Posted on 05/20/07, 12:05 pm |
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I was born with a CHD and have leaky valves. I had open heart surgery at age 6. However I have had keyhole surgery when valves needed some repair. I would seek a 2nd opinion and find out if open heart surgery is neccessary they should be able to do keyhole by putting in a plug depending where leak is obviously.... 
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Hello.. I have a CHD that is called TOF (Tetralogy Of Fallot) and it has 4 main things wrong witht he heart. One is a leaky valve, i had a shunt put in at 6 months of age and my full open heart surgery when i was 2 and a half. i have been doing stress tests sense i was 9 they are not fun but they are needed!! The surgery is harder for me to explain because mine was alot bigger then just a leaky valve but i no that i have a type of material in my heart that is trying to fix it even though my heart is still leaking and has a very large Murmur!
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whats the name of what you have ?...I found out yesterday...that I have ebsteins anomaly...never knew I had it...had heart surgery at age 6 for patent ductus...diagnosed thru the ultrasound....( HUGS )))
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I have not done the research yet myself cuz I can barely keep my eyes open right now, but I have heard if you continue to let it leak and get worse it can be very very very serious, It is best to have it diagnosed and resolved. If my 13 year old can do this so can you. Stay strong and get it fixed. You will feel lots btter!!!
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I have something similar, only I don't have leakage yet. I have to get an ultrasound yearly now just to check for that. Odds are it will happen eventually. They can actually do the operation (Replacing your valve with either a mechanical one or a pig valve) laparascopicaly so you don't have to have open heart necessarily. Stress tests are no biggie. I had one, basically you just get on a treadmill while hooked up to an EKG and they slowly increase the speed and inclination. I only lasted like 9 minutes...lol. There was an older woman who started the same time as me (I'm 23) and she was saying I was going to 'win the race' ...yeah ...I lost.
Even if you had to have open heart surgery, they've done so many these days it's really pretty safe. I'm a nurse, and as a nursing student I got to see a triple bypass, literally being right over the surgeon's shoulder. I also took care of people, including that same patient, after the surgeries. People do very well after open heart. But like I said they can do it laparascopicaly now too I think (I know I can't spell it right). Go do the stress test. It's the healthy thing to do. It will help you and your doctor know how efficient/inefficient your heart is right now. Feel free to message me if you want to talk more :)
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Leaky heart valves can, depending on which valve is leaking, over-fill your lungs with fluid and congestive heart failure. They most likely will see if the leaking can be controlled by medicines like diruetics (like Lasix) and meds that make the heart beat stronger (like Digoxin). You should have it checked and treated. Fluid around your lungs (Pulmonary Edema) or fluid around the heart caused by a leaky valve can be fatal if not treated. I know all this because my 6 week old son died from Congestive heart failure. I didn't know what signs and symptoms to look for concerning heart failure and didn't have him treated in time. I know that is scary for you, but that is why you should have it checked out. They can treat and fix leaky heart valves and maybe you wont even have to have open heart srugery, although my daughter, now 6 months old, had open heart surgery when she was 4 months old, and has done great! You can do it!
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im 14 and on the 27th it will be a year seince i had this surgery it`s not bad you dont feel a thing dont be scared if you wait it might get worse!!
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I was born with a bicuspid aortic valve, which I didn't know about until I was 32. It runs in my family. I am supposed to have an ultrasound once a year and have had the stress test as well as an EKG. My last ultrasound showed some mild regurgitation, but not enough to warrant meds or surgery. I know that someday, I will have to get the valve replaced, but in the mean time, I watch my physical exertion and I don't take certain over the counter meds that cause my heart to speed up. The stress test is easy...you may get a bit winded, but the Dr. is right there and you are hooked to machines and they will stop you before anything bad happens.
Best of luck to you.
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