Comments on: “Bicuspid Aortic Stenosis… Do I Have A Disease?” Asks Ellen

By: Keri Kish

Keri Kish — Thu, 28 Jan 2010 22:10:43 +0000

I just found out yesterday that my son, who is three years old has Bicuspid aortic valve. We were going to Childrens hospital in Boston to see his cardiologist for a check up on his SVT that we found over 2 years ago. He has been on propanalol for over two years now and he has been doing great. We have done three holters on him in the past few year and they all come back flawless with no activity. The doctor said everything looks great and all his heart functions are perfect. He said that children grow out of the SVT and he was one of them, but to hear about the BAVD was a shock to my husband and I. He told us not to worry about this. Put it in the back of our minds it not a big deal right now in childhood. He said as he gets older they will check him and monitor everything. He will be going back in a year for a follow up with the SVT because we are weening him off the medication and he will have all the testing again. I was shocked and worried when I heard this and really don’t know anything about it. I have been trying to do some research on my own and just need some help. Can you please help me. Thank you Keri

By: Barbara D

Barbara D — Sun, 14 Jun 2009 01:41:21 +0000

Ellen,
I am an echocardiography tech, and I just came upon this site today, WOW I am going to get Adams book.

Please try and not worry, easier said then done. A person is born with “two leaflets, bicusipid valve” or the three leaflets. You have the two leaflet. When the aortic valve opens and closes it closes by a two leaflet or a three leaflets, I use the anology that the leaflets look like a “Piece of thread”. A person like yourself and many others being born with the two leaflet will have heart surgery in thier 40′s, 50′s and 60′s. Those born with the “three leaflet” can have their surgery when they are 60′s 70′s 80′s. What happens is the leaflet gets “tired” and forms a white calcification on the leaflet, being that you have a two leaflet, that happens sooner in life. This calcification is called schlorosis then as the schlorosis gets thicker the opening to the valve gets smaller and then you over time will have Aortic Stenosis. You will be watched more closely by your Cardiologist and have more frequent echocardiograms. When the doctor starts having you have more then one echocardiogram a year, he is watching to see the size of the aortic stenosis, when it gets to a certain “criteria” they then will replace or repair the valve. There are many great cardiologist and cardiovascular surgeons who will help you along the way. If you are not happy with the way your doctor treated you, move onto another as that one is not for you. Find the one that can explain or have one of his staff members explain to you. Request that you speak to a surgeon and see what your options are, as he will tell you from reading your echocardiogram and other things when surgery might be. Be proactive in your journey, there are so many success ahead of you and you will be as well. Remember this YOU ARE IN CHARGE, they are all working for you to make you better. Good luck

By: Allyson Meacham

Allyson Meacham — Fri, 05 Jun 2009 01:09:43 +0000

Don’t freak out, Ellen!! A bicuspid aortic valve has 2 leaflets that open and close instead of the normal 3, so the opening is a bit smaller than it should be and the blood has a bit smaller opening to get through. I had exactly the same condition as you–my pediatrician noticed something strange with my heartbeat when I was 2–I started seeing a cardiologist yearly by the time I was 5. At age 49, 3 years ago, I had my bicuspid aortic valve replaced with a mechanical St. Jude valve and am doing fine.
It is important to have a yearly check up with a cadiologist–find a different one if you don’t like the one you have now. Sure, the thought of surgery is scary, but there are so many, many people who have had it and have gotten along great, like me!

By: Steve Falor

Steve Falor — Mon, 01 Jun 2009 16:12:52 +0000

Sarah,

When I was your age I was diagnosed with a heart murmur. It was very faint so nothing was done. I am now 61 and am 4 months into my recovery following aortic valve replacement as a result of severe aortic stenosis involving a bicuspid valve. The ensuing years I lived a very active life. I am well on the way to recovering and feel better every day. Be thankful that you know have the diagnosis so you and your Dr. can monitor it. If and when you do need it replaced the technology is evolving where it may be possible to replace it using the femoral artery.

By: Sarah in McKinney, Texas

Sarah in McKinney, Texas — Mon, 01 Jun 2009 14:34:40 +0000

Ellen,
Yes, you have a heart disease, but rest assured that it is treatable! I had the same thiing: a biscupid aortic heart valve that began to calcify (stenosis). When a heart valve calcifies it cannot open sufficiently to allow proper blood flow. Find a good heart doctor that you like now! Have your heart checked regularly because the calcification can happen quickly in some patients. I put off seeing my heart doctor at the beginning of my stenosis and be the time I saw him again it was time to find a heart surgeon and schedule heart surgery because the calcification had advanced so quickly. I am not trying to scare you, but you need to find a heart doctor that communicates well and one that you like, so you can get the information you need.

I had aortic heart valve replacement surgery Sept. 2nd, and it went very smoothly and I was back up and going quicker than I thought. Adam’s book is a great resource, and so is this web site.

Keep asking questions throughout this whole process – you will feel better having communicated with folks that have already gone through this. There are a lot of us out here!

Sarah