How did you discover your valve issue?

[charlottekaye]

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]

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]

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]

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]

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]

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.

 

[Mah84]

At 31, switched my primary physician to the one with good reviews and closer to my home. She heard the murmur in my first visit. Asked me to get a Echo, her staff forgot to schedule one. I was completely asymptotic and never had any issues. lead normal life. So, ignored her request and i didn't follow up either. 6 months later in the follow up visit, Doctor asked me, why didn't you get your echo. Go get one just to be sure. Again, her staff forgot to schedule appointment.
One fine day, 2 months after my follow up visit with my physician, I got a call in october that the doctor was thinking about me and checked with her staff. Her Staff immediately called and also scheduled an appointment for the same week. Went for Echo, the nurse who was doing my echo mentioned i've two damaged valves. I was like, what is she talking about. Laughed about it and went home.

My doctor asked me to get an opinion from Cardiologist. She always mentioned that no big deal, just a murmur but she knew something was wrong with my heart (my life saver).

And the day of Cardiologist appointment, reality stuck and went blank. Didn't know what was happening because cardiologist mentioned that i need to get OHS within next 6 months as my mitral valve is severely damaged and has severe stenosis and Aortic valve is moderate regurgitation. Knew nothing about these words. This was November 4th, 2015.

Fast forward on Feb 27th, 2016 had my Aortic Valve Replacement (mechanical Valve) and Mitral Valve Repair.

It all feels like a dream and god's plan. God didn't want to let me know until the last minute. Somehow god gave me immense strength to go thru this. It is what it is and been going strong so far.

 

[Dodgy Ticker]

Hi Mr. V.

At age 50, I was getting a physical exam, as required prior to a boxing match. My doctor picked up a murmur and referred me to cardiology to get checked out before he would sign off. The cardiologist wanted to run several tests, including an echo. I had not yet hit my deductible yet and all the tests were going to set me back a few thousand. I really wanted to fight, so I tried my luck at another doctor's office who did not detect the murmur and since all my vitals were good and I did well on the stress test, he signed off and I had my match.

About a year later, I had eye surgery and met my deductible, so I decided it would be a good time to revisit the cardiologist again and get all the tests done. The echo picked up that I had moderate aortic stenosis and a bicuspid valve.

Jeez - you were boxing at 50!?!?!? RESPECT!

 

[RealtorRick]

Age 15, in 1975, I had a high school football physical and Dr heard a murmur. Failed me and sent me to a Cardiologist. He listened and had some tests done and said it was a nuisance murmur, nothing to be concerned about. 33 years later I had a transient amnesia incident I believed was tied to hot weather and drinking mega-caffeinated energy drinks. All kinds of tests and bloodwork revealed nothing. Neurologist said we will run 1 more test, a TEE(shove a camera down your thoat and have a looksee). That revealed a BAV with calcification. After that, 4 years of careful "watching" led to my BAVR in 2012. The rest is history!

 

[Ilona]

So interesting to read everyone’s story…
”Normal” life until I was pregnant with my first child at 29: routine prenatal check-up and the doctor hears some murmur. Not concerned but sends me for an echo. Echo done just before the move to another country so no follow up with the previous doc. Possibility of bicuspid valve mentioned in the report as well as a slight enlargement of the ascending aorta. Went to see a cardiologist right after the move. Again, no great concerns just the advice to “watch for symptoms like excessive swelling in extremities, most likely later in life, middle age, etc.).
Life went on, 3 more kids and tons of stress so my health/ self-care took a major hit.

Fast forward to my 48th bday - driving on a highway, sipping coffee and beginning to feel iffy. Cannot figure out what is going on but it’s getting worse, wake my husband up to tell him that I am pulling to the side... I managed to get off the road, stopped the car and promptly passed out in the driver‘s seat. Regained consciousness before my husband managed to dial the emergency and felt just fine. So we continued driving back home. The usual denial sets in, surely it cannot be anything serious, right? Plenty going on in the household, who has the time to call the doctor. But Dr. Google says that syncopy doesn’t happen without a reason so I decide to see a proper doctor after all. I DONT REMEMBER MY HEART ISSUES AT ALL, at this point. How bad is that?

All the vitals are fine, ECG is fine. My GP wants to explore further - orders a nuclear stress test and an echocardiogram.
The stress test goes well, no reports of any troubles there.
I go for the echo a few days later, the nurse preforming the test is very professional, no indication of any issues, just a pleasant small talk. I am thinking all is well, much ado about nothing, the clinic is next to a great thrift store so I pop in to look for treasures. Half an hour into my treasure hunting, I get the call from my GP sounding somber: a large aneurysm on the ascending aorta, she is booking me to see a cardiologist and a surgeon. I see both specialists the following week and have my OHS a few weeks later.

The crux (sic!) of the story? The most likely cause of the syncope was a gallbladder attack triggered by the coffee! It saved my life ( per the thoracic surgeon who did not think I would have lived to celebrate my 50th birthday) though I do need to deal with it as it still bothers me occasionally!

Looking back, I cannot believe how I have totally forgotten about the issues with my heart, I am sure that the somewhat relaxed approach exhibited by the doctors involved lulled me into sweet oblivion, and the intense family life did not help either. Still… I blame myself for not keeping my finger on the pulse.

 

[sharky7]

DOB/1953,male. went to see GP for annual/1994 or so, and she heard a murmur, saw heart doc/1994 or so and had echo done. flew to Cleveland Clinic in OHIO and had a Mitral Valve repair done/1998 or so, Dr.Cosgrove. My heart doc worked with him up in Ohio back in the day, started to go bad again in about 2013 or so, has the OHS and became the owner of a St. Jude Mitral valve in JUNE/2015, and am home testing for about 2 years now, and love it, much easier on the mind, and much better overall i think.

 

[Critter]

I was 58 years old and I nearly passed out excercising. I had a vision of being in dark hallway with bright light at the end of tunnel and then all of a sudden I was back. My wife called an ambulance which came over to my house and encouraged me to go to hospital. I had recovered and I mentioned I would get testing done as outpatient and that is when it was found about 6 years ago. I had yearly echos starting with valve area at 1.3 (moderate AS) . Every year a little bit more tighter till 11 months ago I wasn’t able to go up stairs that much with overwhelming fatigue. My wife had me get an echo and the valve area was .7 (critical AS). I received a call from my cardiologist on a Sunday and he told me, “It’s Time”. I was in the steep portion of the death curve (50% mortality in one year). I ran before the snow storm and after it and went 2 3/4 mile jog last week and I feel pretty good.

 

[charlottekaye]

At 31, switched my primary physician to the one with good reviews and closer to my home. She heard the murmur in my first visit. Asked me to get a Echo, her staff forgot to schedule one. I was completely asymptotic and never had any issues. lead normal life. So, ignored her request and i didn't follow up either. 6 months later in the follow up visit, Doctor asked me, why didn't you get your echo. Go get one just to be sure. Again, her staff forgot to schedule appointment.
One fine day, 2 months after my follow up visit with my physician, I got a call in october that the doctor was thinking about me and checked with her staff. Her Staff immediately called and also scheduled an appointment for the same week. Went for Echo, the nurse who was doing my echo mentioned i've two damaged valves. I was like, what is she talking about. Laughed about it and went home.

My doctor asked me to get an opinion from Cardiologist. She always mentioned that no big deal, just a murmur but she knew something was wrong with my heart (my life saver).

And the day of Cardiologist appointment, reality stuck and went blank. Didn't know what was happening because cardiologist mentioned that i need to get OHS within next 6 months as my mitral valve is severely damaged and has severe stenosis and Aortic valve is moderate regurgitation. Knew nothing about these words. This was November 4th, 2015.

Fast forward on Feb 27th, 2016 had my Aortic Valve Replacement (mechanical Valve) and Mitral Valve Repair.

It all feels like a dream and god's plan. God didn't want to let me know until the last minute. Somehow god gave me immense strength to go thru this. It is what it is and been going strong so far.

Man, that's a good doctor.

 

[charlottekaye]

At my ballet rehearsal when I was 16, I got dizzy while on pointe and collapsed on the floor. Next day doctor appointment, my internist heard the murmur for the first time. But echocardiograms hadn't been invented yet, so they (1973), so they couldn't be precise about the diagnosis. I was told to expect a surgery at 18, 25, 40, or 65. Had surgeries at 18 and 40. I am 65.

 

[tom in MO]

I was born with a murmur. No problems or symptoms.

When they invented the echocardiogram, I was told I should get one "just to see." But they were very expensive and I had no symptoms. Years later I had major surgery and my GP said, "since you're paid up on your deductible, it'd be a good time to get that echo." I did and they discovered I had a BAV. I was introduced to a cardiologist

 

[ForeverThankful]

I always had a very slight murmur. At 55 I went for a routine exam with our family doctor who I'd been seeing for 30yrs. She gave a listen and looking concerned said that the 'slight' murmur was now a 'really big' murmur and sent me for an echo. A couple of days later she calls me and says the echo showed a severely damaged BAV and a 4.9 aneurysm. She gave me the number for a heart surgeon, no cardiologist, she just sent me right to the surgeon! I had the surgery a few weeks later.

As a footnote - The aneurysm, which was the root and ascending and arch, turned out to be 7.2!

 

[KLS39]

I was 2 when they discovered I had a profound heart murmur. I was followed yearly by a cardiologist. I had my first surgery at 14. I will be celebrating the one-year anniversary of my second surgery next week.

 

[d333gs]

I was 2 when they discovered I had a profound heart murmur. I was followed yearly by a cardiologist. I had my first surgery at 14. I will be celebrating the one-year anniversary of my second surgery next week.

Wow, how old are you now?

 

[KLS39]

Wow, how old are you now?

I'm 58. Definitely had a totally different experience this time around!!!

 

[Geofd]

I have had a heart murmur for years, it always sounded the same, last January/February i got my COVID shots, April the Dr said that it sounded much worse, Sept had a ring installed in/on the mitral valve now back to normal life