coffeelover
Well-known member
Has anyone ever come across any info about...
Newbie bav with severe stenosis
- Thread starter coffeelover
- Start date
Help Support Valve Replacement Forums:
Coffeelover, you had me at your name!:wink2:
The general rule around here is, the worse it is, the faster it goes. Many of us stayed at a standstill with moderate stenosis, but once we moved into the severe category, our valves really start going south quickly. I would ask your cardiologist for advice on how much, and how hard, he thinks you can run.
Best wishes,
Mary
The general rule around here is, the worse it is, the faster it goes. Many of us stayed at a standstill with moderate stenosis, but once we moved into the severe category, our valves really start going south quickly. I would ask your cardiologist for advice on how much, and how hard, he thinks you can run.
Best wishes,
Mary
coffeelover - I think Duffey correctly described the path a stenotic aortic valve will take. That is just what mine did, too. Rest assured, though, that nothing you do is likely to affect the progression of the stenosis. Your activity level doesn't affect the valve - it is mostly affected by your body chemistry and immune systems, which are things you can't really change. The only thing we ever thought of trying in my case (9+ years of monitoring a stenotic valve) was maybe to try a statin drug, as at one time there was some belief in the medical community that these drugs slowed the progression of stenosis. I had so many nasty side effects that we dropped it. I think later on they concluded that there was no direct effect anyway.
bradvo
Well-known member
I was being treated for asthma until my new to me cardiologist got hold of me and ran test, cath and echo. I was then diagnosed with severe aortic valve . It had high density of calcification.
I was told to take it easy , do not exert myself.
Surgery was scheduled within a few weeks and my surgeon afterwards told me my valve ranked in the top 5 worst he has ever saw and he has replaced a lot of them.
Again, my cardiologist rated my valve as severe.
I was at the point before surgery that a flight of stairs or any type incline would get me winded, if walking a flat surface, maybe 50 to 75 yards before I needed rest.
My surgeon said I was also a candidate for sudden death syndrome which can be related to the aortic valve, told me with out the surgery I might have made it 5 months, it was that serious.
This was his diagnosis after he had me opened up.
To me if you say you are severe, then to me it is time to take it easier on your self, just my opinion. I only have me own experience to go off of and for so long I was being treated for the wrong thing.
Take care and follow the docs advice.
Oh, and I just turned 56 today, gotta love the extension on life I have been given
Brad
I was told to take it easy , do not exert myself.
Surgery was scheduled within a few weeks and my surgeon afterwards told me my valve ranked in the top 5 worst he has ever saw and he has replaced a lot of them.
Again, my cardiologist rated my valve as severe.
I was at the point before surgery that a flight of stairs or any type incline would get me winded, if walking a flat surface, maybe 50 to 75 yards before I needed rest.
My surgeon said I was also a candidate for sudden death syndrome which can be related to the aortic valve, told me with out the surgery I might have made it 5 months, it was that serious.
This was his diagnosis after he had me opened up.
To me if you say you are severe, then to me it is time to take it easier on your self, just my opinion. I only have me own experience to go off of and for so long I was being treated for the wrong thing.
Take care and follow the docs advice.
Oh, and I just turned 56 today, gotta love the extension on life I have been given
Brad
I can only add another example of what the others have said. I was diagnosed at age 50. A heart cath at age 58 showed my valve area to be 1.25 but eight months later it was down to 0.70. My valve was replaced two weeks later. As for whether exercise accelerates calcification, quite simply, no one knows. In my family, it seems to be more a factor of age. My Mother's father died at 48 with severe stenosis. One of her brothers died at 50 from the same problem. Another of her brothers was the first to have a valve replacement at age 55. We are four very different people with different life styles, levels of exercise and diet. The common theme seems to be age and a genetic predisposition. Perhaps one day, stenosis will be better understood but for now, no one really knows.
As a coffee lover, I must say that one of the saddest days before surgery was realizing that coffee was contributing to the palpitations I was feeling. I started avoiding caffeine a couple of months before surgery because it made me feel so bad. One of my first surprises after the AVR was my first breakfast tray, two days after surgery, which had coffee on it. It wasn't great coffee but it tasted quite fine.
Let us know how we can help.
Larry
As a coffee lover, I must say that one of the saddest days before surgery was realizing that coffee was contributing to the palpitations I was feeling. I started avoiding caffeine a couple of months before surgery because it made me feel so bad. One of my first surprises after the AVR was my first breakfast tray, two days after surgery, which had coffee on it. It wasn't great coffee but it tasted quite fine.
Let us know how we can help.
Larry
coffeelover
Well-known member
Thanks everyone for the great advise!
Tom Berning
Active member
Hi coffelover,
I'm like you, my BAV stenosis and regurgitation was moderate for a number of years without much change, in the last six months my valve area went from 1.3 to .9, I started having some SOB etc. Most days running even a 10:30 mile doesn't feel so good. I did ask my cardio about running, he didn't tell me to stop, but to back off a bit, so now I'm doing 2 or 3 miles about 3 times a week and walking the other days.
I'm like you, my BAV stenosis and regurgitation was moderate for a number of years without much change, in the last six months my valve area went from 1.3 to .9, I started having some SOB etc. Most days running even a 10:30 mile doesn't feel so good. I did ask my cardio about running, he didn't tell me to stop, but to back off a bit, so now I'm doing 2 or 3 miles about 3 times a week and walking the other days.
budparks
Member
Hi coffelover:
Like the others, I went along several years with moderate stenosis. Then all of a sudden it went to severe and a year later I began having mild symptoms. I am going in for a valve replacement and triple bypass in just a few days on Nov 21st. The triple bypass part is what they discovered in my pre-op work-up. I have read that some people never have symptoms. I think I might have been in denial because mine were not that noticeable to me, but were to my wife. Just be aware that symptoms can creep up so slowly that you don't notice them. With all of the great outcomes being discussed on this site I have much less anxiety about my impending surgery. Wish you well. Bud
Like the others, I went along several years with moderate stenosis. Then all of a sudden it went to severe and a year later I began having mild symptoms. I am going in for a valve replacement and triple bypass in just a few days on Nov 21st. The triple bypass part is what they discovered in my pre-op work-up. I have read that some people never have symptoms. I think I might have been in denial because mine were not that noticeable to me, but were to my wife. Just be aware that symptoms can creep up so slowly that you don't notice them. With all of the great outcomes being discussed on this site I have much less anxiety about my impending surgery. Wish you well. Bud
coffeelover
Well-known member
Tom,
Thanks for sharing!
Thanks for sharing!
coffeelover
Well-known member
Bud Thank you for sharing your experience!
Diagnosed at age 60 after an active life with marathon running, etc. Although I wasn't doing any more running at age 60, I felt fine despite BAV with moderate/severe AS picked up by an echo ordered when my new-to-me GP noted a significant murmur. Valve was 1.1 cm2. Over the next 9 months my valve shrank rapidly to 0.9 then 0.7 cm2. Most people would not have 3 echos in 9 months; I was lucky I did. Pressures went up, etc. I still felt essentially fine. No symptoms doing anything at that time except when I went to altitudes about 5000 feet. There I noticed some SOB that I don't think I had before. Anyway, when the valve reached 0.7 cm2, I consulted a surgeon who said it was time, and I had it done a few months later. After the operation, the surgeon said my valve was a complete mess and I had it done just in time.
Traditionally surgery was reserved for fairly symptomatic patients. Some cardiologists take the approach of making adjustments, trying meds, hoping that things will be stable. But in my case, with super bad echo results but essentially no symptoms, I thought it was time. In recent years the approach has moved in that direction, hoping to avoid permanent heart damage. Some people compensate well, like me, but there is damage being done and it's possible the first symptoms could be very serious or my recovery would be less successful. I can't say this has been well-defined, but it seems with the astonishing safety record of valve replacement surgery, and the fact that the risk is lowest when you are healthy, doing the surgery sooner rather than later is a good idea, unless there is reason to expect that the surgery is not ever going to be needed. The course of BAV is unpredictable. The amount of calcification, stenosis, insufficiency and the rate at which it changes is quite variable. In my case it was very, very fast once it was diagnosed.
Traditionally surgery was reserved for fairly symptomatic patients. Some cardiologists take the approach of making adjustments, trying meds, hoping that things will be stable. But in my case, with super bad echo results but essentially no symptoms, I thought it was time. In recent years the approach has moved in that direction, hoping to avoid permanent heart damage. Some people compensate well, like me, but there is damage being done and it's possible the first symptoms could be very serious or my recovery would be less successful. I can't say this has been well-defined, but it seems with the astonishing safety record of valve replacement surgery, and the fact that the risk is lowest when you are healthy, doing the surgery sooner rather than later is a good idea, unless there is reason to expect that the surgery is not ever going to be needed. The course of BAV is unpredictable. The amount of calcification, stenosis, insufficiency and the rate at which it changes is quite variable. In my case it was very, very fast once it was diagnosed.
N
Nancy jane
Hi all. I know I'm driving my dr & husband crazy I go back & forth on should i listen to dr or this forum? Im Set for feb 9-2o12 AVR. 2 months away
Am a.5. Only symptom is sometimes shortness of breath. DOCTOR Who is one of the most respected and well known in st Louis - & country I might add - has told me holding til feb should be ok unless I get more symptoms while I know the .5 is not great both cardio & dr again after asking them 10 times - is itok to wait ? -- Their comments each time is - this is watched by symptoms . If I start getting worse shortness of breath or faint or dizzy. It's time I am still going to the gym and exercising. Lightly but exercising. A dr friend of mine (not surgeon) said all the years of exercise is probably what is helping me. I know most of you have taken the big step on a higher number . We are putting our trust with this fine dr & his team. And the big guy upstairs !! Trusting the stenosis doest move that fast in 2 months. Having it taken years to get here Hope u all are doing well Best. Nancy Jane.
Am a.5. Only symptom is sometimes shortness of breath. DOCTOR Who is one of the most respected and well known in st Louis - & country I might add - has told me holding til feb should be ok unless I get more symptoms while I know the .5 is not great both cardio & dr again after asking them 10 times - is itok to wait ? -- Their comments each time is - this is watched by symptoms . If I start getting worse shortness of breath or faint or dizzy. It's time I am still going to the gym and exercising. Lightly but exercising. A dr friend of mine (not surgeon) said all the years of exercise is probably what is helping me. I know most of you have taken the big step on a higher number . We are putting our trust with this fine dr & his team. And the big guy upstairs !! Trusting the stenosis doest move that fast in 2 months. Having it taken years to get here Hope u all are doing well Best. Nancy Jane.
N
Nancy jane
Also. To coffee lover - we were worried what to tell our kids - -(no parents involved sadly). we re late 60-s so kids are grown - I explained that I was doing this as preventative - vs. had to. And while serious its a common procedure that will,make me feel much better & allow me to go on our July cruise. Including them was the right thing to do.
I own my own business - and have only told a few management folks. I plan to tell all closer to the surgery
And it explain it as calmly - as possible so they don't worry too much
As for grandkids. Will let their folks tell em. I told my daughter to tell the kids. Our body is like a car & if the mufflers needed changing - what would we do ? Right get new mufflers - well. That's what she's doing. The car will run better with new mufflers. Thanks. Keeping my sense of humor helps except for - do I wait 2 months ? Or not? Aggggg. Thx. Nancy
I own my own business - and have only told a few management folks. I plan to tell all closer to the surgery
And it explain it as calmly - as possible so they don't worry too much
As for grandkids. Will let their folks tell em. I told my daughter to tell the kids. Our body is like a car & if the mufflers needed changing - what would we do ? Right get new mufflers - well. That's what she's doing. The car will run better with new mufflers. Thanks. Keeping my sense of humor helps except for - do I wait 2 months ? Or not? Aggggg. Thx. Nancy
Nancy - you have to trust someone. Your doctor, who you say is one of the best, thinks you are OK to wait. I was confronted with a cardiologist who thought I had years to go versus a surgeon who thought I had 6 months at most despite no significant symptoms. I decided to put my trust in the surgeon.
And you are right not to alarm others. Reassure yourself and them that you are going to be OK. Explain that this is an astonishingly successful form of surgery. It will knock you back for a couple of months, but that's about it.
And you are right not to alarm others. Reassure yourself and them that you are going to be OK. Explain that this is an astonishingly successful form of surgery. It will knock you back for a couple of months, but that's about it.
Coming in late on this thread, but coffeelover, please do not stop running! Keep in shape until surgery. Running will not make your valve worse, your body is doing that all on it's own!
The better shape you are in going into surgery the easier it ususally is.
The better shape you are in going into surgery the easier it ususally is.
coffeelover
Well-known member
Hello everyone,
Thanks for the helpful advise!
Thanks for the helpful advise!
Rocky
Well-known member
Symptoms can be deceiving. My BAV was about .50 cm Doppler which was in the critical range ( Severe is less than 1.0 and Critical is less than .6) and the only symptoms I experienced where slight shortage of breath and slight light-headedness and a bit of coughing. From the time time I went into my family doctor until I had surgery was about 5 weeks. Once the surgeon saw the results of the Angiogram that I had on December 24th, he pushed me as far ahead as he could for surgery.
Even up to the last day before the operation, I felt mostly fine, and I am wondering if the tiredness I felt even then was not psychosomatic.
I am certain that my excellent health otherwise is what kept me feeling good, and what got me back up and on my feet so quickly. 3 1/2 weeks after the surgery I went back to work.
Of course, the good health could also have killed me. The reason I went into my family doctor in the first place was because I though I had a persistent cold. If I had not gone into see him, the first time I grabbed a snow shovel in late December could have killed me.
Even up to the last day before the operation, I felt mostly fine, and I am wondering if the tiredness I felt even then was not psychosomatic.
I am certain that my excellent health otherwise is what kept me feeling good, and what got me back up and on my feet so quickly. 3 1/2 weeks after the surgery I went back to work.
Of course, the good health could also have killed me. The reason I went into my family doctor in the first place was because I though I had a persistent cold. If I had not gone into see him, the first time I grabbed a snow shovel in late December could have killed me.
