New Member With Bicuspid Aortic Valve

[Auston]

Hello:

I am new member and have just been diagnosed with Bicuspid aortic valve. I had echo done couple weeks ago and it showed small leakage along with enlarged aorta and lv. DR. suggested I have TEE done. It was compelted yesterday..thank god it's over. Don't remember much except for trying to pull tube out towards end of procedure. They gave me little more meds...and i was out again. Anyway, Cardiologist spoke with my parents and gave me clean bill of health. However, I was very surprised with his findings considering i had ef of 56% and enlarged lv and aorta with very little regurgitation. He told my family that your sons condtion is totally up to him in the future....he thinks that I stress too much and am very anxious person. He said I could have valve replacement 1 year 10 years 30 or never. I can't work out anymore, run, lift weights or play basketball. That's fine with me if I can avoid surgery. I'll keep you posted on followup exams and hope everyone is doing great.

Any suggestions on this outcome would help(second opinion??)

 

[fyrfytr]

Hey Auston,
Welcome to this Wonderful site. You are with a lot of very special people. I too had a bicuspid aortic valve and mine lasted for 52 years, my Dr. years ago told me not to participant in any school sports and PE. As far as a second opinion goes I guess that would be up to you and your family if you feel you are not getting everything you think you need now. Keep us posted. Take Care and again Welcome!

Dave
__________________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical 27mm

 

[Ross]

Hi Auston and welcome to the forums

My advice would be to get copies of all your tests and keep them on hand for review. What concerns me, and I'm NOT a doctor, is the enlargement of your LV and Aorta. It seems to me they would want to check on that every 6 months to 1 year. The leak would have to a bit more then minor to cause the enlargement. Of course, I'm sure there are other things that could also, but it just sounds sort of odd to me.

As Dave said, the second opinion is really up to you and your family. Personally, given what you've told us, I'd like someone else to look at those test results and get you that second opinion.
Feel free to consider my advice mute. Like I said, I'm NOT a Doctor.

 

[Tom F.]

If you are not 100% confident in what you were told (or maybe even of you are!) go out and find the best cardiologist that you can and seek a second opinion. I have found that there can be a huge difference in the overall approach as well as the completeness of the answers that you get from one doctor to another. I have also found that the major teaching institutions may often provide a higher quality of service than the local doctors, although I must qualify that and say there are always exceptions.

 

[mar-kadam]

Welcome. I agree about the 2nd opinion. After we were not comfortable with the cardiologists here we went to Cleveland. Big difference. Turns out my wife was not .05 opening, rather.08. And not tri-cuspid aortic valve, but was born with a bicuspid (that explains the confused looks by the local team!). So read up, check around, and keep an eye out for new medical developments. Bob

 

[epstns]

Hi Auston, and welcome to The Waiting Room!

I'm another bicuspid valver, and at 55 I still have mine. Only found out about it when a murmur was detected last year. Definitely something to keep a close watch on, but don't live in fear that it will fail in an hour. It oftern takes many years before any symptoms show, although once they do it may progress quickly.

I'll have to presume your doc's warning you off the physical activity has something to do with LV and aortic enlargement. I don't have either to any significant degree, and my cardio is happy that I work out and run 5 days a week. I would ask the doc why they recommend reduced activity. The info will either help you accept the direction, or put some activity back into your life.

All in all, you're not likely in a dangerous or critical spot for some years to come, so welcome to the waiting room. There are several of us who know what's in the future, just don't know how far out yet.

 

[Yokena]

Adult Congenital Heart Specialist

Adult Congenital Heart Specialist

Hi Austin, and welcome. It's good that you've had all the appropriate tests done, and I'd recommend that now you seek out a cardiologist that specializes in adults with congenital heart disease. I have Ebstein's anomaly, bicuspid aortic valve, and right bundle branch block and had surgery two years ago for the Ebstein's. The aortic valve is still doing well, thank goodness, but that one is next I'm sure.

This is a very supportive and helpful site, but you may also want to check out the Adult Congenital Heart Association site at:

http://www.achaheart.org//index.php

They have a list of centers that specialize in folks with congenital heart problems. We ACHDers require special care that not all cardiologists are prepared to give. Don't you just love being "special"?!

Take care and take care of yourself.

Joyce in Mississippi

 

[JimL]

Welcome Auston! I too had a bicuspid aortic valve which calcified over the course of time and was replaced with a St. Jude's just 21 months ago.

I am disturbed by your words: "He told my family that your sons condtion is totally up to him in the future....he thinks that I stress too much and am very anxious person. He said I could have valve replacement 1 year 10 years 30 or never."

Perhaps I am misunderstanding these words, but it sounds like the doctor is blaming you for your condition, one you were born with! It sounds further like the doctor is blaming you for the progression of the condition, over which you have little or no control. I have been told that no one understands why the valve calcifies, only that it does so faster in the young than in the old.

If I am understanding what the doctor said correctly, I definitely think you need a second opinion. Stress is not good, and relaxation is great, but laying a guilt trip on you for something over which you have no control is no way to lower stress.

 

[Arlyss]

Regarding Your Bicuspid Aortic Valve & Aorta

Regarding Your Bicuspid Aortic Valve & Aorta

Hi Auston,
It is deeply concerning to me when I read of an experience such as yours. Information regarding the complete picture of bicuspid aortic valve disease is still emerging, and it is far from easy for patients seeking information.
I emailed you some information resources that I hope will be helpful. They have been posted previously on this forum, but perhaps it is ok to list again for the benefit of new members.

The Thoracic Aortic Surgery pages at Cedars-Sinai, which include information on Bicuspid Aortic Disease, are located at
http://www.cedars-sinai.edu/aorta

The American Heart Association Journal Circulation article on Bicuspid Aortic Valves, located at
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf

Best wishes to you,
Arlyss

 

[Nancy]

Hi Auston-

Welcome to this wonderful site.

Sorry that you find yourself with this condition and are so young. Many people on the board were diagnosed with heart problems early on and lived for many years without much progression of the disease, my husband included, who had rheumatic fever as a teenager, and didn't need surgery until much later in life.

It sounds as if you have a doctor there with few social graces. It also sounds like he was trying to warn you to take good care of yourself, and not worry, but just be cautious because you have this condition. And imbedded in his harsh words are his feelings that if you take care of yourself and are cautious, you will live a long life. But I sure wish he had said something nicer like that instead of the words he chose. And he made it seem like you could actually do something to prevent calcification of your valve, which probably isn't within your ability to do.

There really isn't much you can do physically to change the course of events as to how long it will be before you will need surgery. The most important thing you can do for yourself is to get a fine cardiologist and make sure you go to all your appointments, and get tested when the cardiologist wants you to. The other things you can do are to read up as much as you can about what you have, so you understand it thoroughly, and be aware of how you are feeling, and if you notice changes that have a worsening trend, get on the phone and have it checked out. Right now, finding out that you have this condition has been shocking. But as time goes by, you will be more attuned to your body and will know when you aren't feeling as well as you have been.

The combination of you being vigilant with your health and knowlegeable about your problem, and the good care of a fine cardiologist will help to keep you safe. Trust the good cardiologist to know when of if you will need surgery. And for Heaven's sake, make the cardiologist a person you can talk to. It's a relationship you will have for a long time.

Wishing you all the best.

 

[Jane]

Hi from across the pond

Hi from across the pond

Hi Auston,

I am so sorry you had such a bad experience with the cardiologist. I too had a bicuspid aortic valve and managed to keep mine until the age of 50 (last November 25th). Then I had a mechanical valve fitted and touch wood, continue to feel better every day. I was told 18 months before my op that I would need surgery in maybe 2, maybe 10 years. I found the uncertaintly very hard to cope with. Infact, I went only the 18 months. I queried recently with my cardiologist whether the fact that I had taken calcium tablets before could have caused my aortic stenosis. He said the calcium was unlikely to cause problems at a lowish dose and that research continues into the cause and progression of valvular disease.

I had one registrar a year or so ago tell me once that I was overanxious. I think if he had been in my position, he might have been a tad jumpy as well!!!! Obvioulsy you need to eat well and exercise within your capabilities, and try stuff like meditation, breathing exercises, relaxation, but other than being sensible, it is NOT your fault if your valve deteriorates. Also given the circumstances, you are entitled to feel stressed and it is nothing to feel ashamed of. I feel that you need to find a cardiologist with a more positive and caring attitude: someone who will realise that you are a real person are not just a heart condition or a stress diagnosis. I do hope you find this support soon. All the very best. Just remember that if you DO need surgery, it is not so bad. Just read all the messages from your new "family" on these message boards, we all got through it with our sanity, and sense of humour intact, so will you if you have to, and you will have our support 100%!!. All the very best to you.

 

[MarkU]

Hi Austin,
I was diagnosed with a bicuspid valve when I was about 5. Made it until I was 47 before it started giving me problems due to calcification. I was was fortunate that I was never given any physical restrictions while growing up and was always very active in sports.
In fact, that was one of the factors that influenced my decision to have surgery - I wanted the chance to continue an active lifestyle. Had a 27mm St. Jude mechanical installed 12/15/00.
Since recovering from my surgery 2-1/2 years ago I feel great and still work out four to five times per week at the gym, swim, golf, tennis, bike, etc. I feel very fortunate about how things have worked out. I certainly didn't enjoy going through the surgery (although I did find it to be a very interesting experience...), but the results were certainly worth it in my case.
Best of luck to you,
Mark

 

[J.B.]

Austin, this is in no way meant to alarm you. Only to get your attention. Had I not gotten a second opinion, you would not be reading this now.

 

[alicia]

Hi and welcome Austin,

You can rely on this group for a wealth of information and support. We have the best here that can guide you thru this difficult time in your life.

I found out thru a routine exam that I had a murmor and it just progressed from there. After 2 open heart surgies ending in replacing my damaged mitral valve that I am feeling better than ever in life. Your body will know when and if its time to have surgery to correct the problem. Listen to your body and follow thru with the appropriate doctors. A 2nd and 3rd opinion is always a good idea. This is a very important event in your life and you deserve to get all the right answers. Good luck to you my friend and please keep us updated on your progress.

Alicia