Hello from 67 yo with TAA and AVR

[johninsd]

Hello;

Just signed up for this website. I am 67, diagnosed 3 years ago with a Thoracic Aortic Aneurysm and moderate to severe Aortic Valve regurgitation.

I've had echocardiograms every 6 months since the initial discovery of this condition. All have been stable. After the last one a few weeks ago the cardiologist said we could start thinking about surgery if I was tired of the activity restrictions (HR below 70% of calculated max, no lifting more than 20 pounds). He advised waiting as long as I could stand it as the replacement valve will have a limited lifespan. I assume he's thinking tissue valve.

I've been fairly active before this diagnosis (triathlons up to half Ironman completed, Ironman I dropped out halfway through the bike - wasn't my day. Also I've cycled coast to coast twice and was a fairly active SCUBA diver in years past. I paddle a sea kayak as well).

So I've been reading as much as I can stand and browsing sites like this for help in making a decision. I think the next step will be to get the cardio to refer me to a surgeon to discuss options. Maybe I'll luck out and my existing valve can be repaired - fingers crossed.

And one more thing - my niece had this same thing happen to her and has had her aorta and valve replaced (with a mechanical valve) and she's only in her 30's. I'm thinking maybe there's a genetic component to this. Don't know what good that info might do though.

That's all for now - I'm glad I found this site -

John

 

[dick0236]

And one more thing - my niece had this same thing happen to her and has had her aorta and valve replaced (with a mechanical valve) and she's only in her 30's. I'm thinking maybe there's a genetic component to this. Don't know what good that info might do though.

That's all for now - I'm glad I found this site -

John

Welcome, you will get a lot of good info on this site.

It is known that bi-cuspid(two leaflets instead of three) valves can be genetic.

I have two neighbors in their mid to late 70's who have recently had tissue valves implanted. The surgery has slowed them down some.... probably due more to major surgery at their age rather than valve type. Tissue valves do not have the life of mechanical valves but are usually recommended for seniors whose activities are normally not as demanding as in younger people. You could consider a mechanical valve but the possible issues with warfarin in your senior years might also limit your lifestyle. I'm 78 and on warfarin. So far I have had few issues with warfarin, but my gut tells me that when I really get old(LOL), it may cause a new set of problems as other parts of my body begin to "go south".

 

[Duffey]

Hi, John, and welcome! I think If I were you, I'd want to consult with a surgeon. Cardios seem to always want to drag the wait time out. Surgeons have more of a "let's get this over with" approach. I hope you'll keep us informed as to what you learn. I believe that BAV's have a genetic component. I have one, our son has one, and our grandson has one plus an enlarging aorta.

 

[johninsd]

Thank for the responses. I don't have a bicuspid aortic valve, the reason for the regurgitation is that the aneurysm is right where my aorta exits my left ventricle so the valve is stretched out and the leaflets can't close completely. I see my internist in a few days and will discuss this with him (he's the one who initially heard the subtle murmur that led to the first echo, been going to him for over 20 years, great guy, very forthcoming and answers questions all day long if I keep asking them). I have noticed lately that I get out of breath more easily, but it's hard to say whether that's because of diminishing capability or because I notice things like that more than I used to.

 

[Duffey]

Thank for the responses. I don't have a bicuspid aortic valve, the reason for the regurgitation is that the aneurysm is right where my aorta exits my left ventricle so the valve is stretched out and the leaflets can't close completely. I see my internist in a few days and will discuss this with him (he's the one who initially heard the subtle murmur that led to the first echo, been going to him for over 20 years, great guy, very forthcoming and answers questions all day long if I keep asking them). I have noticed lately that I get out of breath more easily, but it's hard to say whether that's because of diminishing capability or because I notice things like that more than I used to.

John, if you've been followed by an internist for 20 years, are you saying you've known about the aneurysm for that length of time? Most VR ers don't know if they have a BAV until they're actually operated on. It's hard to diagnosis otherwise.

 

[river-wear]

Duffey - an audible murmur speeds things up a bit. They were pretty sure I had a BAV all along, but you're right, it's hard to see on a TTE. Once I had a TEE they knew for sure.

John, I had a similar condition in that my valve was all stretched out because my ascending aorta was at the high end of normal. My valve was several millimeters bigger than it should have been for my size. Add to that, the gaping "hole" when the valve was supposed to close and I turned out to be kind of a mess.

 

[Duffey]

Duffey - an audible murmur speeds things up a bit. They were pretty sure I had a BAV all along, but you're right, it's hard to see on a TTE. Once I had a TEE they knew for sure.

John, I had a similar condition in that my valve was all stretched out because my ascending aorta was at the high end of normal. My valve was several millimeters bigger than it should have been for my size. Add to that, the gaping "hole" when the valve was supposed to close and I turned out to be kind of a mess.

Yes, that's why I asked how he is so certain it isn't a bicuspid valve.

 

[johninsd]

I did have a TEE right after the initial echo - no one's ever said anything about a bicuspid valve - the TEE should have shown it no? I`ll ask anyway on my next visit. And the aneurysm was not found until the initial echo 3 years ago - doc heard a subtle murmur and ordered the echo. I do have a vague memory of someone mentioning a murmur decades ago but don't remember the circumstances. Had an exercise EKG about 30 years ago and all looked great but I don't know whether that test would have found an aneurysm or not.

 

[Duffey]

I did have a TEE right after the initial echo - no one's ever said anything about a bicuspid valve - the TEE should have shown it no? I`ll ask anyway on my next visit. And the aneurysm was not found until the initial echo 3 years ago - doc heard a subtle murmur and ordered the echo. I do have a vague memory of someone mentioning a murmur decades ago but don't remember the circumstances. Had an exercise EKG about 30 years ago and all looked great but I don't know whether that test would have found an aneurysm or not.

TEE's don't necessarily show a bicuspid valve, no. They couldn't tell me definitively until I was opened up on the operating table. I ask, because you raised the question of there being a genetic component. If you have a bicuspid, or a member of your family has a bicuspid, it's quite possible that there's a link.

 

[Superbob]

Hi John, welcome to the forum. An internist detected my murmur when I was in my 20s and said someday I would have to have a valve replacement for the leaky valve. That day came nearly 40 years later, when I was 63. I didn't really comprehend the BAV aspect of this when I was going through it, but now I understand I was BAV. By the time or surgery, I also had a greatly enlarged aortic root (aortic aneurysm) and surgeon took care of the valve and root with a combined stentless device, porcine (the Medtronic Freestyle, which I actually picked out and suggested to the surgeon). It's still working well (knock on wood) 9 1/2 years later as I approach my 73rd birthday. In my case, my cardiologist was all rush-rish about the surgery while my surgeon was initially more cautious -- until an echo showed enlargement increasing at a rapid clip.

Glad you are here with us. Lots of good people here to relate their experiences and lend their support. All best to you….

 

[johninsd]

I have an appt. with a surgeon early next month (September 2014) so am getting my questions together. Any and all suggested inquiries are welcome.

 

[epstns]

John - I suggest that you start another new thread, as you may not get too many people perusing this one any more.