the question is WHEN to have AVR..

[ar bee]

hi all

iam 39 with AR (severe, but asyptomatic) for almost 20 years (biscupid and endocartitis) and i am on hyzar to decrease pressure. ie the day of avr will come (as i see it now i would almost surely go for a mechanical valve).

the issue i am facing is that 1 cardiologist and 1 surgeon recommeond avr within the coming few month, whereas another one still favours "let's measure and decide".
I read a fair bit and all literature suggest to wait (ventricle size and ejection fraction are still within limits). surgeons ALWAYS want to go for avr that's what they are here for, hence i tend to somewhat discount that opinion, plus i am also worried that the MDs these days are very afraid of any legal action should anything go wrong (accused for waiting too long)

what parameters did you take into consideration when deciding on timing (non-emergency cases of course)??

thanks specifially for replies and thanks to the masters/contributors here!

ar bee

 

[tommy]

Ar Bee,

First, welcome to the VR forum.

You pose the question that often frustrates people. Doctors have different opinions. How do you decide?

I guess part of the anwser is that it is you that makes the final decision. It would be a lot easier if you could get five opinions and they would all be unanimous. But the reality is that you must cast the deciding vote. Then don't look back.

Its a bit of a shame that you question the doctors' motivation, that they may be putting their own liability ahead of your interests. I'm not criticizing you, just muzing. Its a shame because society is turning that way. And its a shame because it muddies the water at a time when you want the water to be crystal clear.

I would keep asking questions until confident in the answers. For example, to the doctor that says "wait and see", what would he or see have to see in order to say "now is the time"? How long does he think that will take?

From my perspective, 2 out of 3 is a pretty strong indicator. Sounds like you have unanimous decison that surgery will be necesssary at some point in time.

Best wishes for your decision.

 

[Ross]

Hi Ar Bee and welcome to the forums.

So much goes into making the decision to go ahead with surgery, that it's really hard to call. The one thing that isn't hard to call is when your heart is enlarging and has reached the upper limits of normal range. If this is the case, take action now. Some of us have waited until it was actually too late and then the damage has been done.

Surgeons want to take care of things before damage sets in. Cardiologists seem to take the stance of "Wait and see" which more often then not, leads to troubles.

 

[Marvin]

Ar Bee

Marvin had a wait and see doctor up until mid of jan this year. each year marvin would go in for a echo and then he would say it is still okay. The last few times he said that marvin was in what he would call the critical stage so to let him know if he had any pain or short of breath from doing small things. This had me kinda worried I felt like if it was this close shouldnt we be doing something.

Well in Jan Marvin changed doctors because he felt like it would be getting close to that time and for insurance reason if we had the surgery done in a different plan it would be completely paid. But this was in reality the best change we made. The new doc had marvin go to have a heart cath (something the other never had done) which then let us know that we needed to have the surgery done with in a month. Marvin had the avr on 2/06/04.

The surgen told us that when he was in there that marvins valve which should normally be around the size of a half dollar was now the size of a pencil eraser. So I feel that the wait in see is not always the best approach. Good luck on what ever you decide.

 

[Heather Fisher]

Ar Bee

I'm also with the opinion of "go get it done". I probably could have waited several more months, etc. I just hate it when the doctor tells you "If you pass out, get really short of breath or have chest pains come back before 6 months". I attribute part of my easy recovery to the fact that I did not wait until things were critical to have the surgery. For me it was just easier to go ahead and get it over with! Best of luck!

Heather

 

[ALCapshaw2]

ar bee wrote: " the question is WHEN to have AVR?"

1 - BEFORE you DIE

2 - BEFORE your heart suffers PERMANENT DAMAGE

Search for the post from Scott Vant where his heart
enlarged over a 6 WEEK period. Scott is a young
athletic kind of guy who went down hill FAST.

Also, look at the ATRUIM dimensions, not just the Ventricle.

SERVERAL contributors have commented that their surgeon said their valves were in MUCH WORSE condition than the (echo) tests indicated and that it was good they went ahead with surgery when they did.

'AL'

 

[Karlynn]

Ar Bee, welcome!
Closely evaluate yourself. Since this is something you've been living with for quite a while, slow declines in stamina, breathing, endurance etc, can sneak by you and you adjust your way of life accordingly without really realizing it. So, do you find yourself doing less than you did a few years ago, do you have a nagging cough at times when you don't have a cold? Are you getting periods of palpitations? And if you are, are they occuring more frequently?

Doctors can sometime look at someone your age and think that because of your age and the fact that the tests aren't coming back with a screaming red alert attached to them, that you can go for quite a while.

As Ross said, heart size is a big indicator, but don't let them wait until it's past the normal limits.
Best Wishes!

 

[medtronic of borg]

FYI

FYI

Going into this with a chip on your shoulder is not the best way to get the best care.

Med

 

[George DiMundo]

I agree with Heather that the stronger you are when you have the procedure, the quicker and easier will be your recovery. It is a difficult choice and you may be able to get by for awhile, perhaps even quite a long while, without the surgery. But why risk doing damage to your heart as it tries to compensate or why risk a catastrophic event to indicate when your surgery should occur? Like Heather I probably could have waited several months but I felt the time to fix the valve was now before I developed other problems. I'm in the "go get it done" camp, too. Good luck in your choice.

 

[Bryan B]

ar bee,

I noticed you have had endocarditis. With my condition they have always said as long as you aren't experiencing symptoms it would be best to wait. But I had endocarditis about 3 months ago and now they are saying let's fix this now while you are healthy. They think that I'm now even more prone to endocarditis and they said the next time I may not be so lucky. They would much rather operate now rather than in an emergent situation whith another infected valve. I'm not sure how long ago you had endocarditis, but that seemed to be the "thing" that turned my condition from "wait and see" to "it's time".