asymptomatic blues

[ludlowjack]

Interested in anyone's observations or experiences with the diffulculty reconciling the need for aortic surgery ( and all it entails ) with feeling good. Intellectually, I understand my valve is at.6 or .7, but except for fairly sternuous exercise, I don't feel anything!
Has anyone been in this situation, waited, and been glad they had?
I do have an appoitment with the surgeon at Lankenau tomorrow to discuss dates.

 

[Johnny Stephens]

I was at .6 when I went into surgery, but didn't realize until later that I was sicker than I thought. I was admittedly in some level of denial (not saying this is the case with you ). I would only feel it when trying to take more than one flight of stairs, or walk briskly - otherwise I was functional.

I have seen many others here mention the same thing - they can't balance how good they think they feel with the apparent need to have major surgery. Another factor to remember: you want to have it before it effects your heart structure permanently.

If, after meeting with your docs you're still not comfortable, get another opinion.

 

[LUVMyBirman]

Hello and welcome.

At the time of my diagnosis I felt great. Very confusing and misleading. My decision to move forward with the surgery was based upon chamber size and enlargement. Waiting may have caused other effects like A-Fib. Which I avoided by taking care of the underlining condition. If I had to do it all over again would not change a thing.

Wishing you all the best in your decision process.

 

[Georgia]

SYMPTOMATIC blues

SYMPTOMATIC blues

I had a different problem than you; but it all boils down to getting surgery when it'll do the most good. It's simply inconceivable how fast your condition can deteriorate. I thought I was OK at Christmas; by mid-January I was a mess and couldn't lie down at night & breathe. You don't want to go there. Talk about depressing!

I certainly agree with getting a second opinion, but generally if your cardiologist thinks you should have surgery, you probably should. Cards are notoriously slow off the mark to recommend surgery.

Good luck at your appointment. Believe me, discovering that you have this valve thing is depressing in itself. Let us know what you find out.

 

[epstns]

I think I know how you feel, but I'm just a bit earlier in the progression. My aortic valve is at 1.0 cm sq, and although from a clinical perspective I am asymptomatic, I can definitely point to differences in my physical state over the past 3 to 5 years. My cardio is not worried that I get tired earlier in the evening than I used to, nor is he concerned that I can't do the physical work I used to -- I'm still "well above the line" of cardio capabilities because I can still run 3 or 4 miles (jog, really) without any symptoms. It is just a matter of time, but until the numbers call for it (either valve area or heart dimensions, etc) the cardio's all want to wait.

I'm seeing another cardio today to get another opinion. I don't want to be one of the ones whose surgery was "almost late." I don't want to rush it, but I would rather err on the side of earlier rather than later.

Of course, that's only my $.02, and free advice is worth what you've paid for it. . .

 

[ccrawford]

I was on the other end of the spectrum. By the time I had my second exam and cath, the symptoms had really gotten worse including a rare type of angina on the right side of my chest, and my excercise program had become very limited. When the surgeon said he was free in two days, I jumped at the window. I can see where you are coming from. Maybe if you pretend you have symptoms ????? Or realize that in time you'll have a serious problem ??? In my case, I was feeling more fit two weeks post surgery than I was pre surgery. Strange how this affects people so differently. Be assured that in the long run, you'll be glad to have this behind you. Chris

 

[Rain]

Hey there ludlowjack...

My PCP was waiting for me to appear ?symptomatic?...... by the time she decided I should see a cardio... he said my heart wouldn?t survive the surgery!! Because of waiting too long I now have complications that I will live with forever, including an enlarged heart and a-fib. I say if you need a second opinion to convince you... get a second opinion. But don't wait too long to have the surgery.

I have a son with a dilated aorta. My cardio is recommending surgery in the next few years. Although I don?t want to see him go through the surgery at such a young age (he?ll be 20 in a few days) I would rather he have the surgery before the dilated aorta causes other problems that cannot be fixed. I will encourage him (just as I am you) to get a second opinion.... I want him to feel comfortable that he is making the right decision to have it done. But I also don?t want him to wait too long. He has absolutely no symptoms either. His aorta is at 4.6 He?s a very active person.... this makes it hard.

I didn?t think I had that many problems either.. I was still water skiing and all kinds of stuff when I finally seen my cardio. My heart had deteriorated so slowly that I didn?t realize myself how bad it was. I knew my heart was going crazy when I exerting myself. Although it scared me out of my wits every time that happened it usually didn't last long, so I just ignored it. Bad idea..... Don?t ignore it.

This time you are in right now is the hardest of all. Makes the surgery and recovery seem like a piece of cake.

Best wishes.

 

[Nancy]

Hi Jack-

Welcome to this wonderful site. You will like the support and help you can get here. Everyone understands the situation.

If you have been told that surgery is needed, I would pay attention. Get a second opinion, if you want, even a third, but if there is agreement, then you need the surgery.

With my husband's aortic valve replacement 25 years ago, he knew he had heart problems because he had a murmur from rheumatic fever. But he ignored it and played competitive sports and did all kinds of very physical things. He finally passed out on the basketball court, and had his surgery soon after. However, he had been courting danger for many years.

With his mitral valve replacement, he was very, very ill prior, and also with the repair on the mitral, when he was even sicker. I don't recommend that you wait until you are very symptomatic. You won't like that at all. Things can go downhill very fast, and by the time he finally had surgery, he could barely walk to the bathroom without passing out and couldn't sleep at night except in a sitting position, and even then he couldn't breathe.

Facing this surgery is hard when you have symptoms, but you have lots of incentive, then, to feel better, when you're asymptomatic, it makes it seem unreal. Your heart is compensating for it's inability to pump efficiently by enlarging, and that is not a good thing.

Best wishes and take care.

 

[RonT]

I too did not have major symptoms, other than exhaustion, and was putting off the surgery but a couple of guys on this site jumped on my case. I had my aortic valve replaced with a mechanical a little over six months ago and I can't believe how good I am feeling now! Those guys and this website have really helped me get through the surgery and recovery!!! Please don't hold off on the surgery. Life is to precious! Thanks to everyone!!!!!!!

Ron