I just got diagnosed with a bicuspid aortic valve and need some advice

[MrsBray]

Does the mechanical valve make noise? I read somewhere that you can actually hear it.

It sounds like a watch ticking. I don't hear it all the time. In a quiet car, in the bathroom, in bed at night - is when I hear it the most. Sometimes my husband can hear it. But when I'm moving around, or there's an air conditioner running, or an aquarium pump, or a tv, or walking through the mall? Nope, can't hear it. My sister couldn't hear it even with a stethoscope.

Do you have a normal sounding heartbeat when the doctor just uses a stethoscope?

It totally depends on the doctor! I had the murmur (that I knew about) for 10 years. At a D.O.T. physical in year 8, the RN said to me, "That's a nice strong and solid heartbeat you've got, no problems there!" I about fell off the exam table!

 

[Heart2.0]

Hello !
I object! Why should you suffer and decline? Please do get another opinion! And learn all the terms,
Ask questions, bring a supportive person with you. Life is short , why should one qhave to struggle through it?
If I had known...ahhh. Only if. My heart gave so many little warnings ALL dismissed as ( haha) anxiety! Menopause!
Female! What ev's. First cardiologist didn't listen either. Ending up in ER week after week really helped me!
( I don't recommend that) makes some noise! Don't minimize anything. It is your life and it can be rich and full!
ok that was my pep talk. Mine was a complete freaking surprise in August and had to be repaired by early December .
So a slow decline then boom! I had a both( tissue )valve and an ascending stem replacement . I am 53. I used to run long distance, race walk, swim , dance. I will again and i plan to for a long time. Then I'll have another valve. And hopefully again be a busy person. Strangely -I am slow to recover yet I didn't need any pain meds. We are all a bit different. So don't Think the worst. Good luck! Be assertive. Women's health issues are still a "novelty” to many medical people.

 

[froggyfreak330]

It sounds like a watch ticking. I don't hear it all the time. In a quiet car, in the bathroom, in bed at night - is when I hear it the most. Sometimes my husband can hear it. But when I'm moving around, or there's an air conditioner running, or an aquarium pump, or a tv, or walking through the mall? Nope, can't hear it. My sister couldn't hear it even with a stethoscope.

It totally depends on the doctor! I had the murmur (that I knew about) for 10 years. At a D.O.T. physical in year 8, the RN said to me, "That's a nice strong and solid heartbeat you've got, no problems there!" I about fell off the exam table!

If I were going to get the surgery, I would probably go for the mechanical valve. I just feel like it puts me at less risk because then I'm less likely to need open heart surgery again. I mean, yeah, I'm probably going to need to take blood thinners everyday for the rest of my life, but that seems less risky than having to possibly go in every ten to fifteen years to get another risky surgery. I have to assume I don't have a murmur based solely on the fact that in my entire life, no doctor or nurse has ever told me he heard anything weird.

 

[froggyfreak330]

Hello !
I object! Why should you suffer and decline? Please do get another opinion! And learn all the terms,
Ask questions, bring a supportive person with you. Life is short , why should one qhave to struggle through it?
If I had known...ahhh. Only if. My heart gave so many little warnings ALL dismissed as ( haha) anxiety! Menopause!
Female! What ev's. First cardiologist didn't listen either. Ending up in ER week after week really helped me!
( I don't recommend that) makes some noise! Don't minimize anything. It is your life and it can be rich and full!
ok that was my pep talk. Mine was a complete freaking surprise in August and had to be repaired by early December .
So a slow decline then boom! I had a both( tissue )valve and an ascending stem replacement . I am 53. I used to run long distance, race walk, swim , dance. I will again and i plan to for a long time. Then I'll have another valve. And hopefully again be a busy person. Strangely -I am slow to recover yet I didn't need any pain meds. We are all a bit different. So don't Think the worst. Good luck! Be assertive. Women's health issues are still a "novelty” to many medical people.

Thanks for the pep talk lol. I know what you mean though. I went to the ER multiple times with this thinking "what if Im having a heart attack!" and being told "oh, its probably just heartburn." I was even thinking of getting my daughter checked out to make sure we can keep an eye on that if I managed to pass it on to her. Are you getting a mechanical valve this time?

 

[AZ Don]

The CT or MRI can give more information about an aortic aneurysm, but I'm not sure that they provide more information than the echo about the valve. All the key measurements for the valve come from the echo report: valve area, left ventricle ejection fraction, aortic valve velocity, mean gradient, etc. You should get a copy. If I had not requested a copy of a report for another issue, I would never have known I had an aortic aneurysm and a BAV. Three Dr's missed it! I was stunned that the first time I was told I had a murmur after 51 years was by my heart surgeon. Either no one else ever heard it or no one ever mentioned. I can't help but wonder what was the point of all those other Dr's listening to my heart over the years?!

Who in their right mind would refuse a referral to a patient with a congenital heart defect AND chest pains?

 

[epstns]

When you have a trusted cardiologist available, definitely have your daughter's heart checked. The BAV condition is hereditary, but not all siblings or offspring will have it. It is just more common along familial lines of those who have one than of those who do not.

I am still trying to get my daughter to go in for an echo (she's 28, and stubborn). She seems to have no inkling of any symptoms so far, and many BAV's do not present symptoms until middle age, so she has time to find out all about her own heart. She knows all about my condition and the fact that we suspect that several relatives in my dad's family had it, so she has been warned.

 

[VegasBAV]

He's 24 and he's thinking of seeing his daughter's doctor? He's got a bicuspid valve and symptoms and he can't see a cardiologist? This doesn't say much about the state of medicine in Indiana.

 

[froggyfreak330]

He's 24 and he's thinking of seeing his daughter's doctor? He's got a bicuspid valve and symptoms and he can't see a cardiologist? This doesn't say much about the state of medicine in Indiana.

My daughters doctor is a family practitioner who sees everyone from newborns to the elderly. He would just be my primary care physician if he can take me, but I'm going to switch if he wont give me a referral to a cardiologist. Plus, Im not seeing him instead of a cardiologist, just along with one. The only reason I haven't gotten a referral yet, is because my old doctor got in a car accident before he had the chance. By the way, Im a woman.

 

[froggyfreak330]

When you have a trusted cardiologist available, definitely have your daughter's heart checked. The BAV condition is hereditary, but not all siblings or offspring will have it. It is just more common along familial lines of those who have one than of those who do not.

I am still trying to get my daughter to go in for an echo (she's 28, and stubborn). She seems to have no inkling of any symptoms so far, and many BAV's do not present symptoms until middle age, so she has time to find out all about her own heart. She knows all about my condition and the fact that we suspect that several relatives in my dad's family had it, so she has been warned.

Im going to call some PCP's tomorrow and see which ones are taking patients because it doesn't look like Dr. Darnaby will be able to take me on as a patient. He's really trying to take on as many from Dr. Chiganti as he can, and my mother got in as his patient because she had been going there longer than I have. I will definitely work on getting my daughter in to get that echo done(if she can sit still that long lol).

 

[froggyfreak330]

The CT or MRI can give more information about an aortic aneurysm, but I'm not sure that they provide more information than the echo about the valve. All the key measurements for the valve come from the echo report: valve area, left ventricle ejection fraction, aortic valve velocity, mean gradient, etc. You should get a copy. If I had not requested a copy of a report for another issue, I would never have known I had an aortic aneurysm and a BAV. Three Dr's missed it! I was stunned that the first time I was told I had a murmur after 51 years was by my heart surgeon. Either no one else ever heard it or no one ever mentioned. I can't help but wonder what was the point of all those other Dr's listening to my heart over the years?!

Who in their right mind would refuse a referral to a patient with a congenital heart defect AND chest pains?

No one has refused to give me a referral, its just that Im preparing for if that does happen. Anyway, I read that an MRI can give a better image of the valve, at least the more advanced ones do anyway.

 

[river-wear]

FWIW, when my surgeon wanted a better view of my aortic valve, he had me get a TEE (trans-esophageal echocardiogram). The throat-numbing stuff is yucky, but the overall procedure isn't bad.

Good luck - I hope you'll be able to see a cardiologist very soon.

 

[froggyfreak330]

FWIW, when my surgeon wanted a better view of my aortic valve, he had me get a TEE (trans-esophageal echocardiogram). The throat-numbing stuff is yucky, but the overall procedure isn't bad.

Good luck - I hope you'll be able to see a cardiologist very soon.

Oh God, having to get a camera down my throat?! That sounds scary to be awake for lol. Thanks for telling me though, maybe I will mention that to my future cardiologist.

 

[clay_from_nj]

All my cardios and surgeons have done echos routinely and caths when they need a better look. Never a CAT or MRI for my heart. (Though I did have my head CAT scanned once, but that was unrelated. ;-)

 

[epstns]

The only time I had a CAT scan of my heart was after valve surgery, when I had some complications and they wanted to visualize the valve to rule out some possibilities. All the monitoring was via standard transthoracic echo (through the abdominal wall), and after surgery they did a TEE. The numbing gel was the worst - the "camera" is really quite small.

 

[cldlhd]

I was diagnosed on March 6th with bicuspid aortic valve and I have the ascending aneurysm with it. I've had my moments of freaking out also but I've received a lot of good advice here, Pellicle in particular has been a big help to me. The first surgeon I had a meeting with said I should have an echo in 6 months and he'll see me again in a year. As my root is 4.9 cm and the ascending is 4.8 cm , and this being my first set of measurements I have no idea how fast its growing, I find myself in the strange position of hoping my 2nd surgeon I'm seeing on May 20th wants to do the surgery.I just turned 45 and I'm active with an active 7 yr old son and living afraid to lift anything remotely heavy is driving me nuts. My only real decision is repair vs replace the valve . I'm leaning towards replace with the On-x valve with the graft already attached.

 

[river-wear]

Don't worry, froggy, most US hospitals also give you some "twilight" drugs when they do the TEE. You'll hardly remember anything. I was really worried beforehand, and it wasn't a big deal.

 

[Heart2.0]

Hello froggy,
I chose a tissues valve knowing full well I will have to have it replaced. And most likely by artery delivery.
I cannot handle the meds even 90 days on Coumadin was hell for me. BUT we are all different!
I have all the stupid allergies and am a weenie in general chose what is right for you.
There is an adult congenital heart association. They will help you find a congenital heart Dr in your area.
It is now a sub specialty and really important to go to a thoroughly educated practitioner. Look for their
Website. It is super helpful to connect with them. I have a nice lady I chat with once a week while I recover.

 

[joanpieroni]

Tee

Tee

Oh God, having to get a camera down my throat?! That sounds scary to be awake for lol. Thanks for telling me though, maybe I will mention that to my future cardiologist.

I just had a TEE they have you drink a little liquid that kinda numbs your throat then give you lala med in your IV and that's it you wake up in a different room and don't remember a thing!
I am 5 weeks post AVR and feel great perfect blood pressure & heart rate!

 

[froggyfreak330]

Hey everyone, I wanted to give you updates: I found a cardiologist and have an appointment to see him on June 12. Unfortunately that is as soon as I could get in(now I just have to make sure I don't forget lol). I have to travel all the way to Lafayette for the appointment, and it turns out he's located in the same building as the doctor that treated my Grandpas skin cancer. The main thing I'm hoping will happen is that I'm told I was misdiagnosed and it turns out its something less serious(you know, something that doesn't require invasive surgery to correct). I know its a longshot but its still a possibility so I'm going to hope to god that first cardi that looked at my echo was wrong. Anyway, thank you all for being so supportive. It feels really good that I have a bunch of people on here who knows exactly how I feel and give great advice. Thanks!