How long after you were told you needed a valve?

[Bill B]

Good advice I think. I worry about damage done to the heart while waiting...enlargement, etc.

Jim

I think surgeons clearly recognize this and advocate surgery before irreversible changes occur. Some cardiologists, particularly my first one, often wait for definite symptoms and try to manage them for a while before deciding surgery is indicated. I had my AVR done while I was still asymptomatic and had a reasonable 55% EF pre-surgery, but my recovery, even to get back to baseline, is still going to take months.

 

[river-wear]

Martin - that's one heck of a waiting list over there!

 

[Dexter Bob]

Hey John,

I was asymptomatic and my GP heard a murmur during a routine exam in Sept. So I was then on the march to AVR, undergoing Echo, CT Scan, and finally an angiogram 10/15. I met with the surgeon a couple of weeks later. We had prior plans to travel to Calif. for Xmas with elderly relatives and I didn't want to be in a recovery mode from surgery during that time. The surgeon was fine with that, but he too said "Sooner is better". So AVR here I come, 01/07/2010

Bob

 

[DavesMom]

I found out in mid-November and had surgery on February 1st. The cardio told me not to wait long because my aortic valve measured 0.6.

I still can't believe I'd spent the previous summer in England feeling fine and walking for hours every day. I even had to climb quite a hill to go see one of my friends and I made that trek numerous times without SOB or any other problem. Only three months after my return I found out I had to have AVR. Yikes!

Cheers,
Michelle

 

[Mentu]

Listen to Al. When surgery is scheduled depends upon a number of factors including test results and symptoms. Most of us start off with the calculations made following an echo cardiogram. You can get copies of the tests you have received which can be helpful as you discuss timing with your Cardio. For me, my Cardio said that "Soon" was 4-6 weeks. As it happened, I began experiencing renal failure just before my AVR which was 7 weeks after my Doctor said "Soon".

Larry

 

[Buffy41]

John,
I live in Vancouver as well. Once I found out I needed surgery I got to pick the date with the surgeon and only had to wait 6 weeks. I found out at the beginning of Dec so if it wasn't for xmas it probably wouldn't even have taken that long. I had it done at Royal Columbian, who are your doctors?

 

[JohnCalderwood]

I found out in mid-November and had surgery on February 1st. The cardio told me not to wait long because my aortic valve measured 0.6.

The one number I remember my cardiologist telling me was that my measurement was .57 and that it can start to do damage to the heart at .79. Does this make any sense? I guess obviously it would be different for every individual how fast it will go from .57 to .79.

 

[Eva]

In 1986 when my valve insufficiency was discovered, I was told that one day I would need surgery. Time passed until March 2008, I was told I needed surgery within 8-12 months. I have the surgery after six months.

 

[hall]

I went in the ER with SVT and they did the AVR 4 days later. Wish you the best.

 

[ALCapshaw2]

I found out in mid-November and had surgery on February 1st. The cardio told me not to wait long because my aortic valve measured 0.6.

The one number I remember my cardiologist telling me was that my measurement was .57 and that it can start to do damage to the heart at .79. Does this make any sense? I guess obviously it would be different for every individual how fast it will go from .57 to .79.

With an Effective Aortic Valve Area of 0.57 sq cm I would ask you "What are you doing TOMORROW" but since it is Thanksgiving, I would think more ASAP and hope to get in before Christmas.

IF you develop Severe Shortness of Breath or Extremely limited tolerance for Exercise, I would head to the ER at a Major Heart Hospital Immediately.

FYI, many Surgeons and Cardiologists use 0.8 sq cm or less as their "Trigger" for recommending Aortic Valve Replacement.

As the opening becomes smaller, the heart has to pump harder to get enough through the Aortic Valve to the rest of the body. This puts a high pressure on the heart muscles and walls which leads to enlargement of the heart. At some point, this enlargement becomes PERMANENT and Surgery to replace the valve is not enough to restore your former capabilities. That is why most Surgeons and many patients believe "Sooner is Better".

'AL Capshaw'

 

[bvdr]

I found out in mid-November and had surgery on February 1st. The cardio told me not to wait long because my aortic valve measured 0.6.

The one number I remember my cardiologist telling me was that my measurement was .57 and that it can start to do damage to the heart at .79. Does this make any sense? I guess obviously it would be different for every individual how fast it will go from .57 to .79.

Actually, it would go from .79 and as it worsened (got tighter) it would become smaller and arrive at .57 or whatever the actual figure would be.

 

[TXGal]

My first surgery it was about 3-4 weeks.. same with my second.. best of luck

 

[Marcia58]

With an Effective Aortic Valve Area of 0.57 sq cm I would ask you "What are you doing TOMORROW" but since it is Thanksgiving, I would think more ASAP and hope to get in before Christmas.

IF you develop Severe Shortness of Breath or Extremely limited tolerance for Exercise, I would head to the ER at a Major Heart Hospital Immediately.

'AL Capshaw'

Actually, John, since you live in Canada and celebrated Thanksgiving a month and a half ago, there's no holiday hooha standing in your way.

What ARE you doing tomorrow??!!

Marcia

 

[twinmaker]

With my first OHS (repair), I was told in May 1974 that I had a problem with my mitral valve. My surgery took place four months later. I was told at the same time that I would eventually need the valve replaced sometime in the future. My replacement was seven years later...1981. LINDA

 

[Bina]

My cardio dude wanted to book me in 2004, but I refused.
So, I waited until 2005, requested a stress test echo, and the tech couldn't do it for fear of me dying right there.
Turned out that my valve was at .8 and I had tons of symptoms that I was in denial about.
I had AVR a few weeks later in Montreal.

 

[ctyguy]

15 days. I was told I had a heart murmur as a child but nobody ever said anything about a bicuspid valve. Once the cardiologist told me what was going on I wanted it dealt with right away. Waiting for 15 days was bad enough, I can't imagine going months knowing whats looming out there.

I would say get on with it....best of luck.

 

[TiredTickerInTx]

I went to the ER with shortness of breath and mild chest discomfort on October 10th and I am having surgery on Tuesday.

 

[Cozycat]

Diagnosed with murmur in Oct. 07, rechecked at 6 months and still not time, another recheck in Dec. 08 and it was time per my cardio. In mid January had the cardiac cath and confirmed it was time. Surgery on 2/13/09. And, yes, the waiting is the worst part. I was so glad that it was less than 2 months from the "time to do it" and the actual surgery. And deciding which valve is no picnic either...but the answer does eventually come.

Midge

 

[Marguerite53]

Well I would be very unhappy with the cavalier way your cardio went off on vacation for a month, didn't even tell you that he was, and leave you with nothing but a vague impression of what "sooner" actually meant. I would be very irritated by that.

I knew of my BAV for over 25 years. When the valve became stenotic and started closing down (the first "alert" was an aortic valve measure of 1.0) I went 3 years, echoes every year. My cardio said she would call in the surgeon when it closed to .7 cm sq.. It did in December 05. I suddenly developed several other medical problems (small, and unrelated) and dealt with those first. Then there was the trip my husband wanted to take...... so I waited until mid April of 06 to actually have the surgery. My valve closed down pretty quickly over those 4 months. I was fine, though, luckily. I don't think I should have waited. But, I'm fine, as I said. No damage.

You need to get on the phone and call that doctor today (yeah! you already celebrated Thanksgiving, so their office should be open, yes?). And I mean today!!! Ask him who the surgeon is who he will be referring you to. Find out about that surgeon and if you like the number of surgeries he's done, and where he was schooled and who he does business with, then make an appointment with him. If things work differently in Canada and the cardio needs to get you started then you have a conversation with that cardio and find out when he intends to send you in to the surgeon. Get moving on this. You have decisions to make and information to gain and you need to be your own best health advocate. This is a sharp learning curve and you need to get started on it.

I do not mean to concern you about your health. I would hope that the cardio would have been quickly responding to you were there some dire need. I just want you to feel..... to know.... that you are in charge of you.

Best wishes and please keep us posted.

Marguerit

 

[OldManEmu]

5 months from being told, however over a month of that I was being treated for endocarditis and VR with active endocarditis is a last resort due to the high risk of getting the new valve infected.
I also elected to have a Ross and there are only two surgeons in Melbourne that perform them, so you have to get in the queue for them.