Questions - Unicuspid Aortic Valve Options

[lieb2101]

Greetings,
First off I'd like to say how grateful I am to find a community of peers to consult about my situation.
I'm a very active 26 year old male engineer, recently married, trying to figure out what to do about all of this. Here's the story:
I was born with a murmur. In my teens this was diagnosed as a bicuspid aortic valve, later to be diagnosed as a unicuspid. My condition has had little effect on my lifestyle but recently my father had a heart attack (he should be ok now after a little work), this was a big wake up call to get myself checked out again.
This time, after an echo-cardiogram, the Doc says I've got a unicuspid aortic valve with regurgitation and moderate blockage. I've been ordered to cut any "exertion" out of my daily routine as it could make me pass out or die. This includes weight lifting, jogging, biking, and just about everything else I like to do for fun. My problem is that I feel normal! I don't have any heart enlargement and I don't get lightheaded or dizzy during or after exercise. I have noticed a slight bit of chest discomfort lately but it feels like anxiety to me. According to the Doc, I'll be looking at replacement in the next couple years.
So, now it's time for me to start my research.
I guess my best options will probably be either a mechanical valve or the Ross procedure. I don't think I can take a life of clicking and blood thinners, plus everything I've heard about the ross procedure sounds encouraging. The idea of surgery at all scares the crap out of me.

1) How long have people in my similar situation been able to put off surgery?

2) What is the post surgery recovery like, how long are most people out of commission until they can live a "normal" life again?

3) Have any uni/bi-cuspids out there had the Ross Procedure done? If so, how's it going?

4) How bad is the clicking of a mechanical valve?

5) Can anyone recommend a good valve cardiologist in the Detroit area? Anyone ever have any experience with a Dr. Epstein?

Thanks everyone...
-Brian

 

[Old clicker]

I cant answer all you're questions, but can offer my opinion.

The only symptom I noticed was a wierd feeling in my chest. I had a little heart enlargement (they didnt say how much a little was, and I didnt ask) I was advised to have surgery soon. It was about five months.

I was back to work in 6 weeks. It was about 6-8 months before I think I was fully recovered.

Dont have an opinion on the Ross procedure.

I can only hear the clicking when I listen for it. For me its a calming sound (I feel at ease when I hear it).

I can recommend my cardiologist, I think he good. Around 4-6 hours from Detroit, up here in Canada

 

[Nancy]

I believe many here will say that the very BEST time to get repaired is BEFORE your heart enlarges. And this is the most up to date thinking about valve replacement. Long gone are the days when you have to be absolutely just dragging along at death's door before you should have the surgery.

And another hint, cardiologists usually want to wait until you become symptomatic and even then they might wait, surgeons want to get you done before any permanent damage happens.

Valve choice is an extremely personal choice. But I will say that Coumadin and the clicking noise aren't as horrible as many people believe. My husband's has been on Coumadin for 28 years and also has been clicking for that long. He has two mechanicals.

Read as many posts here as you possibly can and educate yourself on valve replacement. Don't forget to look in Reference Sources. There's lots of excellent info. there. You will have to locate the choices at the bottom of the forum page that lets you see posts from the past (from the beginning). You'll be amazed at what is there, and you'll get yourself prepared.