"Waiting Room" Record

[Nocturne]

How long did you have to wait in the "waiting room"? How far along was your AS by the time it was discovered?

My doc strongly hinted that my "very minor" AS would not need surgery for maybe another 20 years. I'm not sure how realistic that is, but I also wonder how that would stack up to the experience of the others here.

 

[Catie]

I had mild (probably very mild, but they somewhat freaked out over it) aortic stenosis in 1975, when bicuspid aortic valve and murmur were dx'ed. Said I'd have to have my valve replaced within 15 years. Only at the last echo in June did it turn severe.

 

[Nocturne]

Good Lord -- that is a LONG time!

 

[Catie]

Yeppers, it is!

 

[Art O Ceitinn]

43 Years for me

 

[Nocturne]

I've read that bicuspid valve tends to progress more slowly than a normal valve with calcific sclerosis. Still, those are some long times.

 

[Paleowoman]

35 years from when the murmur was first heard and bicuspid aortic valve mentioned until valve replacement.

 

[wxman]

Valve replacement was first discussed when I was 10...had AVR surgery at age 50.

 

[almost_hectic]

15 for me. I think wxman wins!

 

[Catie]

I think Art O Cetinn is longest so far at 43.

Mine's been 42 yrs and surgeon's nurse yesterday said he thinks my recently-become-severe valve is "borderline." He wants another echo.

 

[Twobike]

Doctors would say for years that I had a heart murmur, but I felt fine and it didn't mean anything to me. In 2004 my new family doctor said " you know one day you'll have to do something about that". Then in 2007 I started into Afib. While seeing a cardiologist for that, I was told that the valve would have to be replaced in about ten years. Today I'm waiting for them to call me and give me a date for my surgery. It's been a stressful month.

 

[epstns]

My first inkling of any heart trouble was in 1970, when I almost failed a military induction physical for missed heartbeats. I was able to get them to forgive me (I was joining the National Guard) and didn't hear any more about it until about 1999 when I was diagnosed with AS. I then waited another 12 years for surgery. I didn't know for sure, though, that I would need surgery until 1999, so I say that I was only in The Waiting Room for 12 years. I guess I was just impatient.

 

[gregjohnsondsm]

I found out about mine in 197x. First use of echo machine at University of Iowa Hospitals. It was a huge machine, black and white images only. Finally had surgery in 2015. Would have been happy to wait longer...

 

[epstns]

Would have been happy to wait longer...

So true for so many of us, but we have to act when the time is right. This is just another medical situation when we only "think" we get a choice. When the valve says "go" we must act, or bear the consequences.

 

[cldlhd]

I was told I had a murmur back around 19 but nobody thought much of it. In March of 2014 diagnosed with bav and an aneurysm, surgery 11 months later in February 2015.

 

[Richie Rich]

My murmur was heard when I was 14 and not long after I had an echo and various other tests to confirm I had a leaky BAV. I'm 42 now and still waiting, my cardio tells me after all these years the leak is still slight and that my aorta which is now 4.2 cm will probably be what sends me for surgery first.