So many questions-BAV and aortic stenosis-in Birmingham AL

[cfwlaw]

I am a recent stalker on this site and feel blessed to have found it. I am recently diagnosed with Bicuspid Aortic Valve with moderate-to-severe Aortic Stenosis. This was shocking in that I had always been told (since 18 and I am now 54) I had mitral valve prolapse. My echo numbers are confusing to me and I am trying to understand how this disease will progress. My AVA is .8 cm squared with a Dimensionless Index of .3375 (what???) but my mean gradient is 26 mmHg. They found concentric remodeling of the left ventricle some minor tricuspid valve leaking. I have significant palpitations (many times daily) but have always ignored these under the assumption it was just mitral valve. Now I am told my mitral valve is fine. My cardiologist is just going to follow and watch me since this is a new diagnosis and we don't know how I will progress. I am a runner (I run/walk) but she will not allow me to do half marathons any more. I am still running but I do have symptoms now that I know that is what I am feeling. I just assumed running was supposed to cause my chest to hurt. Anyway, glad to be here and I assume I could be in the "Waiting Room" for a while. I would love your incites into what symptoms to watch out for and how quickly aortic stenosis usually progresses. Thanks everyone.

 

[Protimenow]

My BAV was diagnosed by SOUND - doctors listened to it - when I was an undergrad at UCLA, in my 20s. A few doctors - full MDs and probably some in training to become MDs heard the murmur. At the time, I don't think they were doing echocardiograms. They told me at the time that I will probably have to get the valve repaired at around age 45. There wasn't a lot that they could do at the time.

After many years, I felt my energy levels drop. My color went to more of a pale white than a full pink. I had less energy for doing physical activity. At that time, I was able to get Echocardiograms, stress tests, and other diagnostic tests. Just before I turned 41, I asked a new cardiologist 'how sick to I have to be?(before needing surgery). I don't remember the doctors saying that I had aortic stenosis, but this may have been part of the overall heart damage caused by a failing BAV.

Personally, if I was in your situation, I wouldn't worry too much. I'd find the best cardiologist I can find (or at least find one that I trust), and if you're more comfortable, look into other opinions.

I didn't have the 'benefit' of the Internet when I needed my surgery. I had to trust the doctor's expertise more than we do today. I didn't have thousands of sources for conflicting information.

On behalf of myself (and probably many others here), I'm here to provide the information and support that I can. It seems that you're already doing the right things.

 

[Duffey]

Hi, glad you found us but wish it were under different circumstances! How often does the cardiologist want you to return for follow up exams? From the numbers you supplied, it looks like your valve opening is restricted but your gradient is still low. It sounds like the cardio is being conservatively cautious which is a reasonable course of action. The longer you can keep your native valve, the better, so you may be in the waiting room awhile. My wait was four years, but everyone has their own unique circumstances. Best wishes moving forward!

 

[Protimenow]

Regardless of how long the waiting period is, don't let this be a cloud over your head. Live your life. You'll get through this.

 

[epstns]

Hi, cfw, and welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. I spent about 10 years waiting myself, so I know what it is like.

I hate to be the one to be "cautioning" but with your AVA of 0.8 cm2, I would think that your cardio would be starting to speak to you about surgery. Especially true if you are having chest pains, as this can be one of the "cardinal" symptoms that mean surgery is near. The 3 symptoms to be most concerned about are shortness of breath, fainting and chest pain. If you present any of these, they usually want to watch very closely and consider surgery - possibly sooner than later.

That said, I had measurements similar to yours but without any chest pain I continued to run and just live life for a long time until I finally declared that I was "tired of being tired" and moved on to surgery.

Either way, you've come to the right place to learn all about valve conditions, surgery and recovery. There are numerous valve choices, and none of them are bad. At this point, the only bad choice you could make would be to just ignore your condition. I see you've moved past that, so you will be fine.

 

[cfwlaw]

Protimenow- I can't imagine going through this without the research available on the internet. My cardiologist did not provide me with much information after that first visit and I researched inbetween bouts of "oh, my goodness" episodes. I am so glad things worked out so very well for you and am counting on the same for myself. This forum has definitely helped me see that I am in vast company and most everyone is doing well. That alone is a God send. Thanks for the supportive words.

 

[cfwlaw]

Hi, glad you found us but wish it were under different circumstances! How often does the cardiologist want you to return for follow up exams? From the numbers you supplied, it looks like your valve opening is restricted but your gradient is still low. It sounds like the cardio is being conservatively cautious which is a reasonable course of action. The longer you can keep your native valve, the better, so you may be in the waiting room awhile. My wait was four years, but everyone has their own unique circumstances. Best wishes moving forward!

The cardiologist will do yearly echos but I see her every 6 months. November 2016 will be my first "check-in" visit with her. I have researched so much since that first visit/echo and will inundate her with questions. She said she didn't want to make me a "cardiac-cripple" with the diagnosis but I don't want to overlook what I now am recognizing as symptoms-shortness of breath and heaviness in chest. I appreciate your comment. Be well!

 

[cfwlaw]

Hi, cfw, and welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. I spent about 10 years waiting myself, so I know what it is like.

I hate to be the one to be "cautioning" but with your AVA of 0.8 cm2, I would think that your cardio would be starting to speak to you about surgery. Especially true if you are having chest pains, as this can be one of the "cardinal" symptoms that mean surgery is near. The 3 symptoms to be most concerned about are shortness of breath, fainting and chest pain. If you present any of these, they usually want to watch very closely and consider surgery - possibly sooner than later.

That said, I had measurements similar to yours but without any chest pain I continued to run and just live life for a long time until I finally declared that I was "tired of being tired" and moved on to surgery.

Either way, you've come to the right place to learn all about valve conditions, surgery and recovery. There are numerous valve choices, and none of them are bad. At this point, the only bad choice you could make would be to just ignore your condition. I see you've moved past that, so you will be fine.

Thank you epstns! Once i got a copy of my full echo report with the numbers and researched the AVA of 0.8 cm2, I have to admit I was scared. I really don't know what a Dimensionless Index is but it was associated with the comments "These findings suggest moderate to severe aortic stenosis." I guess I am in between on the spectrum of moderate/severe and just need to be cognizant of my symptoms. i do have shortness of breath even without being exercise induced and heaviness in my chest. Of course, the palps and lightheaded on occasion upon standing up too fast. Never have I fainted. When training for my last half, I did almost faint at mile 7 of a 10 mile training run that I stubbornly pushed myself to complete. That was a bad day but it was a very hot afternoon in May so that may have something to do with that.

At least now I am being monitored. I must admit I don't really want to be "waiting" for 10 years. I would rather do this thing before I get too sick. Seems like your outcome would be better the younger and healthier you are. Thank for the comments and support. I truly like reading your posts and comments. Now that I am not so numb with fear and I see how much company I have, I feel this too shall pass. Thanks again.

 

[epstns]

When I was first diagnosed I was classified as "moderate to severe AS" and was completely asymptomatic. My cardio said that he "could not, in good conscience, advise surgery as long as I was asymptomatic and was, in fact, much more active than a typical man my age." This lasted quite a few years, but eventually came to surgery. My concern in your case is that you do seem to have symptoms, thus the need for careful monitoring to see if those symptoms are actually the result of your valve, or possibly something else. If they are found to be due to your valve, surgery may be sooner than my 10+ years.

At any rate, you are now being watched much more closely. Just be totally truthful when discussing your exercise tolerance and symptoms with your doctors and trust them to keep you safe.

 

[Nocturne]

Outcomes are not necessarily better if surgery happens at a younger age -- in fact, impact in lifespan seems to be lessened by older age at time of surgery (first AVR at 67 and later has no significant impact on lifespan afterwards). You want to extend your time before getting AVR for as long as possible, BUT you do not want to delay AVR to the point where the heart is significantly damaged. It is a tricky thing that even the experts are still learning about. But they know a lot more now than they did even ten years ago.

 

[cfwlaw]

Thank you Epstns and Nocturne. I am staying active but I have to admit the cardiologist telling me to stop half marathons has hurt. This is "my thang" with my oldest daughter. But now we are doing 10K and a few 15K so I really should not be complaining. I am so thankful that I have a definite diagnosis that is being monitored. And Nocturne, your information blew me away! Very good to know. I will keep reading and researching. Knowledge is power certainly. Thanks again.