Congenital Aortic Stenosis

[jumpy]

Hi I am a 38 year old male with congenital bicuspic aortic stenosys....Phew....that was hard to type. I have had it as long as I remember and it has been followed every 18 months for about 33 years. I just went to the cardiologist last week and he indicated that there has been "some progression" on the valve. He couldn't give a timeline as to when the valve will need to be replaced but he did indicate that it would be invevitible. It's funny that you can got through life knowing you have something wrong but it just remains in the background (elephant in the room). This forum has been very helpful for the "sometime" that seems to recurr in a lot of threads. I have spent a few hours on this forum and have received a great deal of information. I will have to make a decision at some point and this forum has made the decision a lot easier to put into context. Thank You.

Right now I am in the non-symptomatic stages. I can excercise regularly with no discomfort and lead a normal active life with two young children (aged 4 and 6). I know that this may or may not continue but I can return to this forum and gain valuable information from people who have led the same life that I have. It was interesting to find out that only 1-2% of people share this disorder and the only time it has affected me is when applying for life insurance (that should have been a sign). I have had a life that has been unaffected by this disorder despite being a captain for a major airline. I have had to jump through a few hoops to get this far and anticipate having to jump through many more in the future to maintain my career.

Thanks to those that have shared their stories and I will share mine when "the time" come.

 

[Allisoninoz]

Hi. Similar situation here for me. I'm 41 (well, ok, 42 in two weeks). Working mum to an eight-year-old daughter. Have congenital bicuspid valve that I always knew would be replaced "one day when I was about 40". When you're 20, that's a lifetime away. Not the case any more. I was on two-yearly, then annual check-ups and echo test. I'm now classified as having 'moderate to severe stenosis' that my cardio is watching carefully. I developed a nocturnal cough earlier this year. He switched the mild hypertensive tablet I've been on since I was 20 (Renitec) as it is known to suddenly cause coughs. That has pretty much resolved. I'm not the world's most enthusiastic exerciser and it's hard to discern whether that's because I don't like/can't push myself or because I simply don't enjoy it that much. I had a stress echo test a few weeks ago which they considered excellent (nine minutes, if that means anything to anybody).

I think I'm very mildly symptomatic. I do get tired very easily. While that is sometimes attributable to 'just life' (and other medication I'm on for unrelated issue) I think it's also to do with a hard-working heart.
I feel I"ll need my surgery with a year or 18 months. A big part of me wants it done and over with, although my doc likes to remind me that people don't have OHS until they really need it, given there are risks. Which brings me back to earth.
This forum is fantastic - people are very generous with sharing private stuff and I will share my story when the time comes too.
Cheers, Allison on the first day of winter in Australia

 

[ALCapshaw2]

Welcome Aboard Captain !

You may want to discuss having a Chest CT or MRI to check for signs of an aneurism which sometimes accompanies BAV.
Do you have copies of your EchoCardiogram Reports? If not, it would be wise and informative to do so. Most Cardio's don't take the time to review the entire report with their patients. FWIW, I chart my Echo Reports on a Spread Sheet which makes it easy to spot any changes, even before they fall outside the "normal limits".

After you review your reports, you may want to consider Surgeon Shopping if any of your numbers are close to the usual 'trigger points'. I always encourage BAV patients to seek a surgeon with experience treating BAV patients and the Knowledge and Experience to deal with Connective Tissue Disorders "just in case" that BAV co-morbidity is present.

'AL Capshaw'

 

[Maryka]

I second what Al Capshaw said. I had an aneurysm that caused no pain, but was very dangerous. Only at chest CT or MRI will show this dangerous hidden danger that sometimes goes with BAV. If you have an aneurysm approaching 5 cm., your surgery date will be moved up. For me, going on a lot of beta blockers and watching my activites seemed to stabilize my aneurysm. Eventually, I could not walk very far without needing to stop and rest (my AV was getting much worse). That signaled the time for heart surgery. I had prayed that I would be stable enough to raise the last of my children to adulthood. That wish came true, but it does not always work out that way for young parents. You owe it to your children, as well as yourself, to get the surgery when it is time. Planning ahead is the best plan of all!

 

[Lily]

Hi
Wanted to welcome you to the site. (My husband is a private pilot.) Glad you're feeling non-symptomatic. Take care