How did you discover your valve issue?

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charlottekaye

Well-known member
Joined
Apr 4, 2012
Messages
76
Location
georgia
Unfortunate enough I hope that in your case they found out a bit quicker you had IE on you BAV but because you said ‘similar’ I take it took a while for you too. Surgery went all good? What INR target was set for you for your On-X?
I was at ballet rehearsal. During a section of bourrees on pointe, I hit the floor. My Mom sent me to the doctor the next day. He listened to my chest, left the exam room, and walked out. He came back in with a cardiologist who listened and left. I went into the dr's office and he told me I had a heart murmur that they thought was a bicuspid valve. But echos had not been invented yet, so there was no way to know for sure. He went on to tell me I might need surgery at age 18 ( I was 16,) 25, 40, or 65. (He nailed it on 25 and 65. ) It was a shock, and I called my Mother in tears. Thank heaven for Dr. Nanda in Rochester, Dr. Phillips and Hochreiter and Dr William Gay in NY, Dr. Katchoukas at UAB, Dr. Murphy in Atlanta, Dr. Pacifico at UAB. I am grateful.
 

dornole

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Joined
Jan 5, 2014
Messages
803
Location
Minnesota, US
I got pregnant with twins and developed congestive heart failure due to the increased blood volume and mitral stenosis, which caused shortness of breath and coughing up blood. I went to urgent care and they sent me to the hospital for an echo. Got admitted, then transported to a different hospital with a NICU and had caesarean to deliver the twins and save all our lives. Never knew I had ANY heart issue whatsoever prior to that point. Less than 24 hours from visiting urgent care from twins born and in NICU and me in ICU.
 

Carnelian

Well-known member
Joined
Jul 29, 2017
Messages
55
Location
midwest US
During an office visit. Doctor said my murmur was loud. His eyes opened wide, so I knew it was trouble. He referred me to a cardiologist, who said little to me. Since then I have had 3 other cardiologists. All agreed. The first doctor also discovered cancer years before that--but that's another story.
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,693
Location
Levittown ,Pa 19054
its anecdotal I know, but I still don't get the failure to prescribe antibiotics pre dental cleanings in heart valve patients. All because they worry that some small portion of the population might be contributing to the possibility that some bacteria will become antibiotic resistant.

I'm guessing you take them now before dental cleaning ...

Best Wishes
I don't get it either. I understand the fear of resistant bacteria but if it's up to me I will take the chance on possibly contributing to that issue in order to make it less likely that I'll have a problem. I haven't had an issue getting them prescribed for dental procedures.
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,693
Location
Levittown ,Pa 19054
I was 44 and getting a routine physical. Everything seemed fine regarding the physical including my EKG, blood pressure etc. I asked my doctor if I could get an echo or a stress test done and he said it wasn't necessary. I guess never having had anyone actually take a good look at my ticker and my dad had just died 4 months earlier from a heart attack made me a bit curious. I think he fudged the EKG result in order to get the insurance to pay for the echo. A month later or so I went in for what I thought was a routine echo and was told I had a BAV and an ascending aortic aneurysm. Had a CT angio a few other tests etc, cardiac cath They said they saw a little bit of plaque in the one artery but the calf came back clear so I guess it's in the wall? No stenosis at all, trace leakage so I still have the valve but had surgery for the aneurysm 11 months after my diagnosis. Very glad I pushed for the echo or I never would have known about the aneurysm, according to my surgeon apparently the wall of my artery was pretty thin in spots so good chance I want to be here today if I hadn't found it. That was six and a half years ago.
 

perrybucsdad

Active member
Joined
Sep 5, 2011
Messages
27
Location
Perry Ohio
My heart issue was discovered when I was 3 by my pediatrician. I then went to a peds cardiologist, who I stayed with until I was in my 30's. I had a CoART repair when I was 7, but then they waited to do the valve repair. I was encouraged to be active (just no wrestling or weight lifting) as a kid. I always sort of felt that they hoped that I would not need a second surgry, but looking through my medical records from way back when, I don't think that was the case. I think they felt I woudl always need it, but were waiting for me to stop growing and technology to advance. When I was 28, my wife and I had three kids, and I went to my annual cardiology appointment. I had reported to my doc, that I was constantly exhausted all the time. I told him that many times while at work, when lunch times comes around, I would lie my head on my desk and take a nap as I was just exhausted. When at home, I couldn't even chase the kids around and keep up with them. I remember my doc looking at me and saying "Remember when we said at some point when you are older, you may need surgery? Well, I think now is that point." He did some tests, and the results confirmed the need. Glad I had it done then too as I had an aortic aneurysm at the root, and who knows how long that would have lasted. I'm glad my doctor didn't tell me about that at the time though as I would have worried too much about it.
 
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