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doubleaaaron

Member
Joined
Jul 4, 2012
Messages
11
Location
wv
Had my appointment with the heart doc Monday. Didn't really learn much from it. Said my valve was leaking and that she wanted to keep me monitored. Said to see my pacemaker doctor to see what he can do. I have a concern about it though, I have known a few people ( my day included) that have had leaking heart valves. Turns out they were told that they should be monitored. Well, I have a problem with that considering everyone of them by the next time they had their valve checked ended up having heart failure. I don't understand this. Why don't they just fix it before that happens? I really would rather have more surgeries for replaced valves than have my heart get so weak that they don't even want to fool with it. Case in point my dads. Sometimes I really get aggravated at doctors. I don't think they know what they are doing.
 
Did you say that to your cardio?
You raise good points and your doctors are the ones to whom you'd do best to address these comments.
Maybe you might ask for a referral to consult a surgeon. Sometimes cardios are too slow to suggestt surgeries and surgeons are the ones who are more apt to say 'it's time'.

Best wishes.
 
. . . or maybe get a second opinion?

My first cardio (when I was 52 years old) wanted to treat my valve problem the same way he did for patients in their 80's. I fired him and did some research to find a cardio who actually specialized in valve issues among patients who are younger. Best choice I could have made. We jointly developed my treatment plan and I'm still here to enjoy it.
 
I'm definitely getting a second opinion. I feel like this should be taken more seriously than it is. I already have had problems with my heart since 2006 and now this is going on. When will it stop you know? Steve, how did your process go if you don't mind me asking? Weird thing is, at first they were running around with their heads cut off. Now they act like it's nothing yet they still say the same things are wrong with me. I don't quite understand that, but it is a doctor so I have come to expect things like this. Which really is sad. I am going to get a second opinion for sure. There is no way I am letting this get as bad as my dad did. After waiting so long his heart was so weak they didn't think he would survive the surgery.
 
I have gotten a second opinion twice. I have been able to do the research and self refer myself. The last time I wrote a cover letter and mailed a copy of my medical records including a CD of my tests. I then made an appointment after I talked to the doc on the phone. Best thing I could have ever done.

Are you seeing an adult congenital heart cardiologists? I see a pediatric cardiologist locally and then I go out of state to see an adult congenital heart cardiologist. There is not an adult congenital heart cardiologist in the state that I live.

Debbie
 
Once I found a cardio who seemed to know how to evaluate and treat valve patients who were not "elderly" - patients in their 40's or 50's, not in their 80's, things settled down a lot. For the first 7 or 8 years, until my echo measurements started getting worse, we just did office consult/exam every 6 months and echo's every year. For the last year or two, we did consult and echo every 6 months. I never really did develop clear symptoms, but I did keep a diary of my running times and how I felt after exercise, and I did note a steady decline in my performance - declining at a faster rate in the last year or two prior to surgery. My cardio always told me that he would not be the one to declare that it was time for my surgery, that I would be telling him - and he was right. I finally got tired of being tired, and asked him for a few surgeon referrals. I am lucky in that I live in Chicago, and we have many highly regarded cardio surgeons here. My cardio gave me 3 names, I met with two of them, and chose Dr. McCarthy (formerly of Cleveland Clinic, now at Northwestern Memorial Hospital in Chicago). My consult with the surgeon was in December and I had surgery at the end of February. He was ready sooner, but I had to get things under control at work. Being able to carry on a normal lifestyle at that point allowed me the lusury of choosing my own schedule.

I probably could have had surgery a lot sooner, based upon echo results, but having no clear symptoms, we chose to wait. The fact that I was able to exercise at a level far beyond most guys my age made it difficult for my cardio to press me to operate sooner. Once I had an angiogram and saw the readings, it became apparent that I could have had surgery much sooner, except that my heart was compensating very effectively due to my many years of running and jogging.

Along with your second opinion, you may want to press for an angiogram (heart catheterization) to get the best view of your valves and heart. Once the docs have this report, they can more clearly advise you about how soon to have surgery. If they do not want to test, maybe find another cardio who understands why you want to know. Don't be afraid to ask questions of the doc. If he/she becomes offended, find another doc. You are the patient and you have a right to know.
 
Seriously, your doctor should have told you the extent of your leakage - mild, moderate, severe. And whether your ventricles are enlarged at all. Why the valve is leaking: stenosis or insufficiency. It doesn't sound as if you got much info. You need copies of your medical records, including this latest echo, both for your own knowledge and to take to the second opinion.
Look for a cardiologist who specializes in valves and/or heart failure.
 
I guess my story is pretty similar to Steve's. I also did not have any clear symptoms and was running upwards 25-30 miles a week, at a relatively fast pace. I was shocked to find out that I was born with a bicuspid aortic valve, but what really scared me was the 5.2cm aortic aneurysm that also had developed - all without any clear symptoms.

The first cardiologist I saw told me that he would not recommend surgery for the next 20 years!

I fired him

The second cardiologist took my condition a little more seriously, but I had to keep calling in order to see a surgeon. Surgery was scheduled 10 days after I spoke to the surgeon. I'm sure I was asymptomatic due my running and my heart compensating for the regurgitating valve.

Glad you're going for a second opinion!!!

Keep us posted,

Rachel
 
I was exercising everyday and doing different things daily including, running, biking, kung fu, jump rope, weights. many of the times some in the same day. I was doing fine. Now I get really bad palpitations and out of breath with walking up stairs or my back yard. It's aggravating for sure. The doctor didn't say anything when I told her that either. So a second opinion is def in order. Just have to find one to give me a look.
 
I was exercising everyday and doing different things daily including, running, biking, kung fu, jump rope, weights. many of the times some in the same day. I was doing fine. Now I get really bad palpitations and out of breath with walking up stairs or my back yard. It's aggravating for sure. The doctor didn't say anything when I told her that either. So a second opinion is def in order. Just have to find one to give me a look.

Good Plan, get that 2nd opinion. :)
 
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