S
Shine_on_Syd
I had the same dilemma, my cardiologist said later.- surgeon said sooner. Glad I listened to the surgeon I went down hill fast at the end.
Help Support Valve Replacement Forums:
You're not required to have a mechanical unless you want one or have extenuating circumstances, usually. The choice is well-debated throughout the forums.
Cardiologists will usually say mechanical just based on your age. Make sure that you are getting what suits you best. You have to live with it, not them, and the long-term survival odds (including the resurgery) are equivalent.
As far as how far along you are towards replacement... You don't want to wait until there is actual, permanent damage. One thing you can do about the heart size is check your oldest echoes through now. My LV went from the smallest normal size to the largest, then one knotch more. Then it was listed as "slight" or "mild." However, they rarely take into account the fact that it travelled all the way through the "normal" range first, which means it was quite enlarged, in comparison to itself. See if that's the case with you, if you have old enough echoes.
You're exhibiting symptoms, and that's a sign that you're getting close. Especially with regurgitation, the valve is frequently very calcified and inflexible, which usually doesn't seem to go into the cardiologists considerations. I have to wonder what some of your echo stats are.
Also, you have some risk of little pieces of calcium breaking off.
Exercise now will not help your heart, and may increase the enlargement. If there are things that definitely give you SOB or angina, stop doing them as much as is reasonable. This is not a good time to "shake it off" and move forward. Those symptoms mean your heart is struggling.
You can't fix your valve with force of will, but you can increase the damage to the rest of your heart. It isn't a manliness thing - we all wanted to try to ignore it, but it's not the best approach. You should consider no carrying of heavy boxes, helping people with heavy furniture move, or snow shovelling.
Also, I believe that atheletic people will stress test well, even though they're in trouble. The problem is that the muscles in an atheletic body require less oxygen to function, and tend to hide the malfuction level of the heart. Everything on those tests is rigged toward the "average" person. If you're a runner, you won't display the stress as a less active person would. However, it's not because of your heart: it's because of your well-trained, oxygen-conserving leg muscles. Just my opinion.
We've had competetive bicycle riders get thrown into immediate surgery with .5 valves, as they didn't know anything was wrong. (Opinion-forming information.)
It sounds like you're close and should bring your information to some surgeons to look at. Find out how much they want to do, i.e., both valves?, repair one and replace one? Just the aortic? Then consider your options. In the end, the doctors advise when and what, but you decide.
Best wishes,
Cardiologists will usually say mechanical just based on your age. Make sure that you are getting what suits you best. You have to live with it, not them, and the long-term survival odds (including the resurgery) are equivalent.
As far as how far along you are towards replacement... You don't want to wait until there is actual, permanent damage. One thing you can do about the heart size is check your oldest echoes through now. My LV went from the smallest normal size to the largest, then one knotch more. Then it was listed as "slight" or "mild." However, they rarely take into account the fact that it travelled all the way through the "normal" range first, which means it was quite enlarged, in comparison to itself. See if that's the case with you, if you have old enough echoes.
You're exhibiting symptoms, and that's a sign that you're getting close. Especially with regurgitation, the valve is frequently very calcified and inflexible, which usually doesn't seem to go into the cardiologists considerations. I have to wonder what some of your echo stats are.
Also, you have some risk of little pieces of calcium breaking off.
Exercise now will not help your heart, and may increase the enlargement. If there are things that definitely give you SOB or angina, stop doing them as much as is reasonable. This is not a good time to "shake it off" and move forward. Those symptoms mean your heart is struggling.
You can't fix your valve with force of will, but you can increase the damage to the rest of your heart. It isn't a manliness thing - we all wanted to try to ignore it, but it's not the best approach. You should consider no carrying of heavy boxes, helping people with heavy furniture move, or snow shovelling.
Also, I believe that atheletic people will stress test well, even though they're in trouble. The problem is that the muscles in an atheletic body require less oxygen to function, and tend to hide the malfuction level of the heart. Everything on those tests is rigged toward the "average" person. If you're a runner, you won't display the stress as a less active person would. However, it's not because of your heart: it's because of your well-trained, oxygen-conserving leg muscles. Just my opinion.
We've had competetive bicycle riders get thrown into immediate surgery with .5 valves, as they didn't know anything was wrong. (Opinion-forming information.)
It sounds like you're close and should bring your information to some surgeons to look at. Find out how much they want to do, i.e., both valves?, repair one and replace one? Just the aortic? Then consider your options. In the end, the doctors advise when and what, but you decide.
Best wishes,
Jim -
Got copies of your echocardiogram reports and other lab tests?
You can compare those w/ ACC/AHA guidelines to see if surgery is recommended per accepted body of knowledge.
You can get a copy at: http://www.acc.org/clinical/guidelines/valvular/3205p149.pdf
Excerpt below may be useful to you. I used the guidelines doc to help me evaluate conflicting opinions I was getting. I concur w/ the others - get the replacement before your heart becomes too badly damaged.
Bill
Got copies of your echocardiogram reports and other lab tests?
You can compare those w/ ACC/AHA guidelines to see if surgery is recommended per accepted body of knowledge.
You can get a copy at: http://www.acc.org/clinical/guidelines/valvular/3205p149.pdf
Excerpt below may be useful to you. I used the guidelines doc to help me evaluate conflicting opinions I was getting. I concur w/ the others - get the replacement before your heart becomes too badly damaged.
Bill
K
KathyH
Happyheart, Just to add my 2 cents- I was in the same situation, moderate to severe aortic regurgitation on my Nov Echo and on my pre op TEE in April I had severe regurg and LV hypertropy. I had always been active but found myself slowing down- thought because I was turning 50, I was just getting "old". My cardiologist, said wait. I listened to the people here and went to an experience surgeon at one of the top rated heart hospitals. Now 4 months later I am going for my 10mile bike rides again. I can run up 2 flights of stairs without my heart pounding. I feel so much better, I really didn't realize I felt that bad. I guess it is because the regurg got worst gradually and so I didn't realize it. You have to be ready to have the surgery and only you can decide what valve is the right one for you. Everyone is different. Good Luck.
Kathy H
Kathy H
L
liamty
To me it makes sense to replace when you're younger, fitter & healthier before symptoms make you weaker, however after this very discussion with our cardio he says that isn't always the way and won't recommend the surgery until there is no other alternative and the symptoms are causing problems. I still think that if you are having major symptoms then you are weakened and recouperation would be harder. I am still not convinced. Steves symptoms are not impacting on his day to day life enough to warrant a repair yet, but be sure he won't be getting really sick before he has more surgery. Seems no sense in that. Our cardio says he's had 80 year olds with sever problems recover much faster than 50 year olds. I'm not convinced.....
ALCapshaw2
Well-known member
Liamty wrote:
"our cardio he says that isn't always the way and won't recommend the surgery until there is no other alternative and the symptoms are causing problems. "
THAT is a perfect example of the Ultra Conservative approach taken my MANY Cardiologists.
I wonder what he has to say about the (many) reports of valves being in MUCH WORSE condition than the Echo and/or other test results seemed to indicate, or the LESS THAN DESIRABLE surgical outcomes because the doctors waited TOO LONG before recommending surgery?
It is well known that some (many?) patients exhibit NO symptoms yet have very diseased valves.
My recommendation is to get a SECOND opinion on when to have surgery from an experienced and respected Heart SURGEON. Let HIM recommend the timing for surgery.
'AL' (I believe I had my AVR 'Just in Time')
"our cardio he says that isn't always the way and won't recommend the surgery until there is no other alternative and the symptoms are causing problems. "
THAT is a perfect example of the Ultra Conservative approach taken my MANY Cardiologists.
I wonder what he has to say about the (many) reports of valves being in MUCH WORSE condition than the Echo and/or other test results seemed to indicate, or the LESS THAN DESIRABLE surgical outcomes because the doctors waited TOO LONG before recommending surgery?
It is well known that some (many?) patients exhibit NO symptoms yet have very diseased valves.
My recommendation is to get a SECOND opinion on when to have surgery from an experienced and respected Heart SURGEON. Let HIM recommend the timing for surgery.
'AL' (I believe I had my AVR 'Just in Time')
B
brendamarlene
reports
reports
Al, where can I see those reports about valve being worse than echo reports show?
According to my recent echo and cath, I have been told that I should have reoperation in 6 months to a year, but SOONER if I get symptoms. My only symptom is increasing fatigue. What worries me is that I did not have symptoms before my first surgery, either. ( I was playing competive team tennis 2 weeks before my surgery!). And it turns out my aortic opening was .5 then!!! (Scary!).
Is this a symptom?--- Sometimes (maybe more often lately), I feel my heart pounding extra hard. Is that just my imagination?
I surely don't want to wait too long, but I don't want to have to go through the resurgery sooner than I have to.
reports
Al, where can I see those reports about valve being worse than echo reports show?
According to my recent echo and cath, I have been told that I should have reoperation in 6 months to a year, but SOONER if I get symptoms. My only symptom is increasing fatigue. What worries me is that I did not have symptoms before my first surgery, either. ( I was playing competive team tennis 2 weeks before my surgery!). And it turns out my aortic opening was .5 then!!! (Scary!).
Is this a symptom?--- Sometimes (maybe more often lately), I feel my heart pounding extra hard. Is that just my imagination?
I surely don't want to wait too long, but I don't want to have to go through the resurgery sooner than I have to.
G
gary48
Surgeon
Surgeon
It is only natural-surgeons are better-techniques are better-surgeons are just so much more confident.Listen to youe Surgeon-get a surgeon who offers options-like I said I run with a guy who had a poricine replacement-he is a mad man-NO RESTRICTIONS...
Surgeon
It is only natural-surgeons are better-techniques are better-surgeons are just so much more confident.Listen to youe Surgeon-get a surgeon who offers options-like I said I run with a guy who had a poricine replacement-he is a mad man-NO RESTRICTIONS...
M
mjd414
Hi Happyheart....I am 54 years old and I am almost 6 weeks post op from my AVR. Last year at this time, I was told that I had a leaky valve and that it would need to be watched closely. That resulted in echo's every six months with the last one in late June of 04 indicating that is was time for a cardic cath. I had that done quickly and it showed that I needed to have my aortic valve replaced within the next several months. SInce my wife is a teacher and was home for the summer, and my son was home from law school for the summer I decided to have the operation on 7/14/04. The end result was the surgeon told me after the operation that my valve did not look like a valve. It was so badly calcified that it just looked like a slab of meat.
The point to this story is I am living proof that pushing off this type of operation can, at times, be very dangerous. Obviously, you need to listen to the doctors that you trust and follow their lead. I am not a doctor just someone that is happy I did not push the operation out several months. I have no idea what that would have resulted in terms of my overall health. The key would seem to be finding a doctor/surgeon that you trust "with your life" and going forward with their game plan.
As far as the operation itself, I had never been a patient in a hospital ever, other than being born. For me, the thought of OHS was the scariest thing in the world. Because of this website however I knew exactly what I was facing and that made it easier to deal with. If it were not for VR.com, I would have followed my surgeon's recommendation and had a mechanical valve. It is only because I read all the threads on Coumadin that I determined that FOR ME, the tissue valve was the route to take. I did not want to deal with Coumadin and, in terms of facing another operation in 10 - 15 years, I decided I would deal with it then. Maybe 15 years from now the valve replacement procedure will be much less invasive than it is now.
In my opinion, the key to getting through this process is obtaining as much information as you can and being a party to the process, not just going along for the ride. Since most doctors have never had OHS, they really can't tell you how it will be before, during, or after the procedure but, your VR.com friends can give you that information.
As I said previously, I am almost 6 weeks post op and I was told on Friday that I can start to drive next week and return to work the following week. I walk as much as I can, although I need to do it more consistently than I have. If I can get through AVR anyhone can. I say that because I don't even handle cutting myself shaving that well, so AVR was a very big concern for me.
Whatever you do, try to be as prepared as you can be. Ask as many questions as you can and remember that doctors are not God. They only perform Godly tasks.
Good Luck in whatever you decide to do....be well!
The point to this story is I am living proof that pushing off this type of operation can, at times, be very dangerous. Obviously, you need to listen to the doctors that you trust and follow their lead. I am not a doctor just someone that is happy I did not push the operation out several months. I have no idea what that would have resulted in terms of my overall health. The key would seem to be finding a doctor/surgeon that you trust "with your life" and going forward with their game plan.
As far as the operation itself, I had never been a patient in a hospital ever, other than being born. For me, the thought of OHS was the scariest thing in the world. Because of this website however I knew exactly what I was facing and that made it easier to deal with. If it were not for VR.com, I would have followed my surgeon's recommendation and had a mechanical valve. It is only because I read all the threads on Coumadin that I determined that FOR ME, the tissue valve was the route to take. I did not want to deal with Coumadin and, in terms of facing another operation in 10 - 15 years, I decided I would deal with it then. Maybe 15 years from now the valve replacement procedure will be much less invasive than it is now.
In my opinion, the key to getting through this process is obtaining as much information as you can and being a party to the process, not just going along for the ride. Since most doctors have never had OHS, they really can't tell you how it will be before, during, or after the procedure but, your VR.com friends can give you that information.
As I said previously, I am almost 6 weeks post op and I was told on Friday that I can start to drive next week and return to work the following week. I walk as much as I can, although I need to do it more consistently than I have. If I can get through AVR anyhone can. I say that because I don't even handle cutting myself shaving that well, so AVR was a very big concern for me.
Whatever you do, try to be as prepared as you can be. Ask as many questions as you can and remember that doctors are not God. They only perform Godly tasks.
Good Luck in whatever you decide to do....be well!
G
gary48
Chilihead
Chilihead
Hey your chest won't burst open--I am a gym rat--I run half marthons---my doc just told me to stay away from heavy weights-light weights and plenty of reps are OK-I was lucky they spared my valve-I have a buddy who had a porcine valve replacement-a better runner than me a heckuva athlete-I just turned 50-he is 51--to any one listening--even though my valve was spared-it did flutter and pound when I started back exercising--but went away gradually-I take an asprin every AM.
Chilihead
Hey your chest won't burst open--I am a gym rat--I run half marthons---my doc just told me to stay away from heavy weights-light weights and plenty of reps are OK-I was lucky they spared my valve-I have a buddy who had a porcine valve replacement-a better runner than me a heckuva athlete-I just turned 50-he is 51--to any one listening--even though my valve was spared-it did flutter and pound when I started back exercising--but went away gradually-I take an asprin every AM.
