New Member Intro and Question

[skeptic49]

Hello to everyone!

I was diagnosed with mild AS in 2004 at age 55. Last year (June 07) my cardiologist told me that my heart was somewhat enlarged. Last week he told me that the AV disease has progresssed some and that I'd need to get treated if/when symptoms develop. I probably have some mild symptoms now - huffing and puffing going up steps and hills, and palpitations, so, I figured it was time to get more serious about doing my homework. I found this site and I'm really impressed with the great people here and all the information that is available. I think I'll be around here for a long time and I know I'll have some questions soon. I'm waiting for more detailed information from my cardiologist, i.e., detailed echo results, so I can judge better where I stand.

In the meantime, I have a question about AS combined with a congenital murmur, which I have always known I had. Isn't that sort of a double whammy in terms of stressing out the LV - regurgitation plus a narrowed valve?

It's great to find this site. I know it'll be like a home for me for quite a while.

Jim

 

[Lisa in Katy]

Welcome. I can't answer your question because my problem wasn't congenital or aortic, but I do have one question for you. Are you sure the two things aren't connected?

 

[Superbob]

Jim,

Welcome to the forum! You have come to the right place for a lot of lively discussion of heart issues, and a little fun from time to time, too.

There are a lot of well-informed people here (I am not necessarily one of them ) but the conditions you describe sound a lot like mine.

I had a murmur detected in my 20s and was told I had aortic regurgitation. When I hit my 60s, I was told that I had not only the murmur and valve leakage but a greatly enlarged aortic root. As I understand it, the leakage over time contributes to the enlargement (dilation).

At age 63, I had a combined aortic root and valve replacement, and as far as my heart, I am doing well. (It's just the rest of me that's falling apart.

Anyway, again, welcome, and when you have questions or concerns, I am sure you will find many responses here....

 

[Freddie]

Well Hello there Jim and Welcome to the family.
Wish I could help by answering your question, but there are many others who will be around (eventually) to answer them.

Now don't be shy asking questions.

 

[Cooker]

Welcome to the zoo ... I can't answer your question but I'm sure there are those here that will be able to help.... welcome aboard!

 

[Dawn-Marie]

Hi Jim and welcome to the VR family! I'm not sure about your exact case. I was born with a bicuspid aortic valve, which they didn't find until 1997. I always had a really loud heart murmur, but the doctors always said it was "innocent". Even back in 1997 my family doctor just told me that it was mild aortic stenosis and would never bother me, and he never ran tests (echocardiograms) to see if it was progressing. Then i went into major congestive heart failure in November, 2007. Then they found it had become critical aortic stenosis. I was told that heart murmurs and congenital bicuspid valves go hand in hand. At least in my case they did.

Yes, there are a lot of wonderful people here....they have been a Godsend to me!!

Best wishes to you, Dawn-Marie

 

[hall]

Welcome Jim! I can not answer your question either. This forum is a wealth of information and someone will be along to answer your questions.

 

[Leah]

In the meantime, I have a question about AS combined with a congenital murmur, which I have always known I had. Isn't that sort of a double whammy in terms of stressing out the LV - regurgitation plus a narrowed valve?

Hello Skeptic. It may really be a single whammy, not really AS "combined with" a murmur. If you have a "bicuspid aortic valve" - a common congenital malformation of the aortic valve that many of us on this site have - then the valve malformation, the murmur and the AS are all part of the same thing. The bicuspid (2 leaflet) valve, compared to the normal 3-leaflet aortic valve, cannot, over time, accomodate the blood flow well enough (basically not a big enough opening). Through a mechanism I don't fully understand, this puts a demand on the valve that over time causes it to calcify. The calcification is the source of the AS (narrowing). In addition, sometimes before you are symptomatic, sometimes after, your heart can work overtime to "accomodate" the reduced blood flow and this can cause your left ventricle to enlarge ("hypertrophy").

Last year (June 07) my cardiologist told me that my heart was somewhat enlarged. Last week he told me that the AV disease has progresssed some and that I'd need to get treated if/when symptoms develop. I probably have some mild symptoms now - huffing and puffing going up steps and hills, and palpitations, so, I figured it was time to get more serious about doing my homework.

Cardiologists really seem to vary in their recommendations about surgery timing. The traditional recommendation was to wait for symptoms but some in the field have questioned that approach on the basis that major symptoms may be correlated with less favorable long-term post-surgical outcomes. There's a wealth of information you can read, including the American College of Cardiology guidelines and some recent Cleveland Clinic research. My only caution is that it's really easy for us, as lay people, to take information out of context and all this information is best used as a basis for asking intelligent questions. Here are a couple of links:

http://jtcs.ctsnetjournals.org/cgi/content/abstract/135/6/1270

http://content.onlinejacc.org/cgi/content/full/48/3/e1

 

[WayneGM]

Welcome to VR. Glad you found us. I don't have any insights on your question, but wanted to welcome you. Best wishes and good luck.

 

[Snoviper]

Hello and welcome to a great site!!!

 

[SHEEPDOG]

Leah has it right!

Leah has it right!

That is, as far as I know. I had a murmur detected at about 13 years old. I remember AORTIC REGURG. being used as well as slightly enlarged. Then I was told "SOMEDAY" I would need AVR.That was 30 years ago. FF to April 08 when I was NOT OK'd for a police job because of SEVERE AS/AR. An echo said the area was 1,2cm2 but could be less. A cath said it was really .8-.9cm and I was handed a card for a surgeon and told I have an appointment. SOMEDAY was 07-09-08. I thought I was not symptomatic but I guess I really was. I'm NOT in that bad of shape to be "HUFFING AND PUFFING" on the hills I was walking up. Heck, Im only 43!
I had an ON-X Aortic Valve put in and, while I am not at any ball games, I do feel LOTS better. I started back to work yesterday and although I am not out chasing bad guys, I am back. I feel a bit more normal each day. It won't be long till I an 110%.
Thats about it. Don't wait too long. I hear that the best results cme before patients are symptomatic.

 

[skeptic49]

Thank you, thank you!

Thank you, thank you!

Thanks everyone for the warm welcome and the support.

Leah, I really appreciate your post and the links. Thanks much. For the record, I have not been told that I have a BAV.

I have really learned a lot in the past week. Whew!

Jim

 

[epstns]

Hi Jim, and welcome to The Waiting Room, the virtual room in which many of us await our own turns at valve surgery. I think Leah's answer is on track -- the LV enlargement is caused by the heart muscle's growth in response to the extra effort needed to push blood through the stenotic valve. The murmur is caused by the same stenosis, so it is really one set of circumstances contributing to multiple visible and audible clues of its existance.

Hang in there. I'm 60 now, and have a (probable) bicuspid aortic valve, along with moderate to severe aortic stenosis. I'm still very active and not really symptomatic, so I'm just keeping things neat here in The Waiting Room.

 

[Leah]

Re your post on Aaron's "were you symptomatic" thread

Re your post on Aaron's "were you symptomatic" thread

I've been seen by two cardiologists since being diagnosed ion 2004. The one I prefer actually does the echos himself, but neither one of them is very forthcoming with much hard information. Partly I'll take the blame because I didn't press them for answers since until now the disease was not severe. Obvioulsy it's time for me to get cracking and ask plenty of tough questions. The biggie, of course, is just how many symptoms and how severe do they have to get before it's showtime.

FWIW, even with severe AS, with valve area that measured in the critical range by echo (but without other signs of compromised function), I was never directly told by a cardiologist that I "should" consult a surgeon, rather that we would continue to watch it closely. I decided to consult a surgeon (actually, surgeons) because my best friend from college (a Dr.) and my internist both suggested that this would be a good time to get a surgical perspective - and also because I wanted to talk with the Cleveland Clinic as a baseline before action was necessary. The surgical perspective led to a decision to do surgery. All the surgeons I consulted thought this was the best time, although all thought the timing was somewhat elective. One could be cynical about this (talk to a surgeon, end up with surgery) - but in fact seeing how the surgeons viewed the issue (that surgery was inevitable, that this was the safest possible time with the best expected outcome because I'm healthy now) did influence my decision to go ahead.

My sense (gross generalization) is that cardios, who are basically specialized internists, tend to be more conservative about surgery and surgeons tend to be less so. This can argue for or against seeking out a surgical perspective whether or not your cardio specifically says it's time. Despite not wanting surgery, I'm grateful that I decided to get the surgical perspective. I have a friend who's made the exact opposite decision, i.e., don't talk to a surgeon until you're told it's time to pull the trigger.

Best of luck!

 

[skeptic49]

The Surgical Perspective

The Surgical Perspective

One could be cynical about this (talk to a surgeon, end up with surgery) - but in fact seeing how the surgeons viewed the issue (that surgery was inevitable, that this was the safest possible time with the best expected outcome because I'm healthy now) did influence my decision to go ahead.

Thanks for another great post, Leah.

Yes, well it's the surgeon's job to save lives just as it is for the cardios, but their perspectives are different. It appears to be a sort of a sliding scale perhaps with the cardios generally coming down on the conservative "watchful waiting" end and the surgeons tending to be on the "early intervention" end. Your idea to get a surgical perspective is excellent, though.

I see that a few of us here in roughly the same age bracket struggling with the timing thing. It's nice to know that there are others in a similar boat available for kicking this stuff around.

Thanks,

Jim

 

[Leah]

I see that a few of us here in roughly the same age bracket struggling with the timing thing. It's nice to know that there are others in a similar boat available for kicking this stuff around.

It's especially helpful, to me too, to get a perspective from folks our age, now that 55 is the new 25 - or whatever it's supposed to be now (I'd peg it at 43). Some of the issues that arise - for instance, about valve choice - tend to turn on how old you are, in part meaning how long do you expect to live, what kind of lifestyle do you expect to have, etc. Many of us at 55+ don't feel old (I haven't yet made it psychologically to middle aged, and I'm about 2 1/2 years away from being "senior"), are very active, expect to be around for decades, reality willing, etc. It's good to see how people with that perspective handle these decisions and the reality of having to have major heart surgery.

 

[Donald]

Hello to everyone!

I was diagnosed with mild AS in 2004 at age 55. Last year (June 07).....
Jim

Hi Jim,

Welcome aboard! Pardon my ignorance, but what does AS mean?

-Don

 

[skeptic49]

Meaning Of AS

Meaning Of AS

HI Don,

Nice to meet up online. "AS" refers to aortic stenosis...calcium deposits on the valve leaflets that restrict the opening.

Cheers,

Jim

 

[Donald]

HI Don,

Nice to meet up online. "AS" refers to aortic stenosis...calcium deposits on the valve leaflets that restrict the opening.

Cheers,

Jim

I guess I should have know - that's what I had. The doctor simply referred to it as calcium on my aortic valve. Thanks for the feedback.

-Don

 

[epstns]

Leah,

I'm glad I'm not the only one holding a "flexible" definition of "middle-aged." That was always my mom's age. She passed away at nearly 82, so now that I'm 60 I still have a ways to go!