I need advice from someone else with a heart murmur, please

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Kev125
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/10/2012 5:09 PM (GMT -7)   
Hi, my name is Kevin and I am going to be a high school senior this fall. I was diagnosed with a heart valve murmur in the 3rd grade. I have had to go to the cardiologist once a year since and have a EKG and an echo. I have had a weight lifting limit of 50lbs my whole childhood and teenage years. Last fall my murmur got larger because it stayed the same size until then. I had a stressed test and went back to have an echo 6 months later and it hadn't changed. For some good news, I am very physically fit. I on the cross country and track team and I do great. I run a 18:55 5k and a 5:06 mile. Although my weight lifting restriction has made everyday difficult and I constantly worry about my heart's future. I don't know anyone with my condition but if anyone understands my life, please respond and tell me how you get through it. Thanks, Kevin

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1155
   Posted 7/11/2012 6:37 AM (GMT -7)   
Hey Kevin and welcome. Do you know more about your murmur? Which valve and what is wrong with the valve? I was born with bicuspid aortic valve disease which makes my heart have the "murmur". I'm 37.

Kev125
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/11/2012 7:46 AM (GMT -7)   
Hi, I have a bicuspid aortic heart valve murmur and it is leaking. The concern is if it will start leaking more. By this I mean it doesn't shut all the way. How has your experience been?

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1155
   Posted 7/11/2012 11:23 AM (GMT -7)   
Ok, same as me. I have/had severe stenosis and regurgitation (or leaking). It never bothered me until my mid 30's, when the stenosis and regurg began to get worse causing my ascending aorta to dilate more, which is typical for bicuspid aortic valve disease.

I always knew I would eventually have my valve replaced, it was just a matter of when. It's been a waiting game of becoming symptomatic, the severity of the stenosis and the size of the ascending aortic dilation. As long as I was not symptomatic, we always planned to go in and replace the valve and repair the aorta when the dilation reached 4.5 cm.

But, early this year I was diagnosed endocarditis and went into treatment failure and had to have open heart surgery to clean out the infection and replace the valve. I feel GREAT since the surgery. I didn't realize how crappy my valve actually made me feel until I got a new one. I'm 2 months post op and started running (which I couldn't do prior to surgery).

The only really big no no's is weight lifting..... I didn't think much about my heart, other than my yearly and then later every six month appointments, until I hit 35 and the aortic dilation started growing (minimally).

Do you see an adult cardiologist or a pediatric cardiologist? It's very important to be it the care of a cardiologist that is familiar with pediatric disease or congenital disease.

Kev125
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/11/2012 8:21 PM (GMT -7)   
Wow, this is great to hear from you. How did you feel when you were my age? How was the surgery? I go to a pediatric cardiologist who is very familiar with my situation. I feel the same about knowing eventually I will need a new valve, but is it as bad as it sounds?

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1155
   Posted 7/12/2012 7:01 AM (GMT -7)   
I didn't begin to feel any "different" or have symptoms until I was around 35. And even then, it was only shortness of breath with exertion.

The surgery was not as bad as I imagined it would be. It took a lot of thought to decide on a valve. Tissue or mechanical. The mechanical valve lasts longer, possibly forever, but you have to take Coumadin (blood thinners) for the rest of your life, also they are quite noisy. Tissue valves wear out in about 10-15 years and need to be replaced, but no blood thinners (less chance of developing clots) and they aren't noisy. I also have Crohn's disease, so blood thinners aren't a good option for me.

I went tissue valve and my surgeon likes the bovine (cow). I was in the ICU after surgery for around 16-20 hours, extubation in 6 hours. Just 20 hours after surgery, I was on my feet and walked to my wheelchair to be taken to the cardiac step down unit. I was home just 4 days after surgery. I went back to work 5 weeks post op and was running at 7 weeks post op.

My chest is still sore, it's bone and nerve pain, but I'm better every day (I think the healing is harder on women because of our breasts). I feel better and have more energy than I did b4 surgery. I'm less scared to exercise now. It is a bit daunting to know that I will have to do it again in 10-15 years, but it is what it is and I'm happy to have had the surgery. Of course in my case I had a life threatening infection and the surgery saved my life! Science is cool.
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