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Freebird

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Yes sudden death from aortic stenosis is a known risk but not sure of the rates. My thinking was that having surgery when I was still feeling okay was better than having an operation when I had deteriorated or the aneurysm leaked or worse. I had one incident of blacking out when leg pressing 80kgs felt fine just woke up with a crowd around me!
How long ago did you have the surgery, Annie?
 

Paleowoman

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Yes sudden death from aortic stenosis is a known risk but not sure of the rates. My thinking was that having surgery when I was still feeling okay was better than having an operation when I had deteriorated....
That is the rational thinking because then you are fitter for going into surgery. My problem was that post surgery I never recovered the level of fitness I had prior to surgery - but I think my outcome is more uncommon.
 

jlcsn2015

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Yes sudden death from aortic stenosis is a known risk but not sure of the rates. My thinking was that having surgery when I was still feeling okay was better than having an operation when I had deteriorated or the aneurysm leaked or worse. I had one incident of blacking out when leg pressing 80kgs felt fine just woke up with a crowd around me!
I also tried to delay into the future my AVR surgery in 2015, then one day in August-2015, went to do laundry took the elevator and found myself on the elevator floor with terrible pain in one of my ancles, got up, sat for a bit, and decided to go back to my place, again , woke up in front of elevator floor, then needed a cane to walk, called a friend, went to local pharmacy, colapsed again in the middle of the side walk, in total 5 times in one day, then i call the cardiologist and got the AVR done, got an On-X valve, and that never happened again, just sharing my personal experience,
 

Freebird

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I also tried to delay into the future my AVR surgery in 2015, then one day in August-2015, went to do laundry took the elevator and found myself on the elevator floor with terrible pain in one of my ancles, got up, sat for a bit, and decided to go back to my place, again , woke up in front of elevator floor, then needed a cane to walk, called a friend, went to local pharmacy, colapsed again in the middle of the side walk, in total 5 times in one day, then i call the cardiologist and got the AVR done, got an On-X valve, and that never happened again, just sharing my personal experience,
Having more control and the possibility of not letting progress to this point is what is finally driving me to 'give in' and get it done. May I ask if you were in Severe Stenosis at the time? Had you been asymptomatic up to that day? How long were you in the Severe category? Thank you for sharing your story.
 

KatherineA

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I too thought I was asymptomatic. Even after I was upgraded (downgraded) to serious in 2019 Spring. But looking back, I see now I had little things telling me surgery was coming faster than what I planned in my head.

I think if one can look back objectively it might be helpful in deciding surgery. I did not and pretty much found excuses. I was lucky my December 2019 Cleveland checkup was timed just right and the best surgeon there was available within a month of that visit. I was scared a couple times at home waiting as I could hear my heart work harder and harder all of a sudden.

Little things I dismissed - maybe these are helpful to compare. Spring of 2019, I had allergic reactions, breathing issues, mostly after spending long days digging in the garden, cleaning up the yard after winter I was tired. But blamed it on shingles that lingered into early 2019. Summer, gardening again was not the joyful activity it had been. I grow all my own food I can and have loved it for years so this was weird. But, again, I could blame something else, the unusual hot and dry July and August. So I did. August, teaching yoga was an effort so I stopped that but my own practice was ok. I fainted albeit briefly on an easy hike in November.... and then went to Cleveland. Thankfully just in time.

My father and grandmother both died instantly. We had no autopsy either time. But, we knew my Dad had an untreated and likely undiagnosed heart murmur. I think I was lucky and they were watching out for me

I was diagnosed in 2015 and had “planned” hoped for surgery in 2022 when I could be closer to family in Minnesota. Such is life. The good thing was I found my cool new neighborhood family In West Virginia because of surgery in January 2020
 

Protimenow

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That was my thinking when I had my aortic valve surgery. I had a good job, good insurance, and had the symptoms associated with a poorly functioning aortic valve. I asked my doctor 'how sick do I have to be?' He set up a meeting with my cardiac surgeon.

I may have had a few years left until replacing the valve became critical, but was still strong, pretty healthy, and willing to have it done. Nine months later, I was out of a job, had no insurance, and grateful that I had the AVR when I did.

Sometimes it's more sensible to have a heart issue addressed - even if it may seem just a bit early.
 

Bill B

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I have a similar story. My aortic stenosis (due to BAV) was discovered serendipitously when I was 60, about 12 years ago. I had NO symptoms, but an echo showed severe aortic stenosis with a tiny, sclerotic valve opening. It was a total surprise. I ran track in high school and marathons in my 30s and was still very active with no limitations. My stress test results were fine. My cardiologist was "watch and wait" since I had no symptoms. This was common but somewhat old school thinking at the time with the logic being why do surgery if you don't have a any issues. Maybe half of all BAV patients never know they have it and live normal lives, dying from some other cause. BUT I had severe stenosis, terrible pressure gradients and an LV that was starting to become abnormal. Also, on echo approximately every 3-4 months my valve opening was shrinking at a rate that is usually seen over a year. Still, my cardiologist was of the opinion I should sit tight. I referred myself to a cardiothoracic surgeon at Stanford who was one of the world's experts on BAV. He examined me and my echo and asked me what symptoms I had. He could not believe I had none. He told me, "Well, your first symptom could be your last. You need surgery in the next 3 months." I did. The surgery was successful but a bit harrowing, and included repair of an aortic arch aneurysm. I had transient renal and heart failure post surgically but recovered quickly. BUT I have not since been better than I was pre-surgically. I expected the valve replacement to result in a marked rise in my ejection fraction, but it only moved from 55 to 60-65. I'm not in heart failure but I do have LV anomalies from the damage accumulated pre-surgically and perhaps intra-surgically. So, did "wait and watch" for about 2 years after diagnosing severe but asymptomatic AS do me harm? It looks like it to me.
 

Freebird

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That was my thinking when I had my aortic valve surgery. I had a good job, good insurance, and had the symptoms associated with a poorly functioning aortic valve. I asked my doctor 'how sick do I have to be?' He set up a meeting with my cardiac surgeon.

I may have had a few years left until replacing the valve became critical, but was still strong, pretty healthy, and willing to have it done. Nine months later, I was out of a job, had no insurance, and grateful that I had the AVR when I did.

Sometimes it's more sensible to have a heart issue addressed - even if it may seem just a bit early.
Great points. I'm retired and buy my insurance on the individual ACA marketplace. Given our political climate there's no telling if they'll take away pre-existing conditions/out of pocket max/lifetime limits one day. I suppose in this case, now that I've wrapped my head around it, it's better to Seize the Day.
 

almost_hectic

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Having more control and the possibility of not letting progress to this point is what is finally driving me to 'give in' and get it done. May I ask if you were in Severe Stenosis at the time? Had you been asymptomatic up to that day? How long were you in the Severe category? Thank you for sharing your story.
I was diagnosed by one cardio as needing surgery in the next year or two. Got a second opinion a few months later and my new cardio suggested I needed surgery as well but by his estimation it would be in a month or two. Once out of surgery the surgeon commented I was lucky I even made it to his table in time (lucky I hadn't dropped dead). I had no symptoms.
 

epstns

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The question of "When?" is always a very personal one. I was initially diagnosed at age 52, with moderate-to-severe AS. My only symptom was gradually diminishing exercise tolerance. I had NO other symptoms, being a daily runner/jogger for over 30 years, in addition to being a confirmed gym rat (weights, cardio, etc.) and just "living the dream." My first cardio and I used to play a game we called "Stump the Fellow." In this game, he would direct new cardiology fellows to interview me, examine me, then diagnose me. They almost always blew it, becoming very concerned when they heard what were my "normal" activities, then heard my mammoth, late-peaking murmur. I was more active than most men half my age, yet had this very ominous murmur. The message they were given was to never jump to conclusions, but to evaluate the entire patient, not just one test or another.

Fast forward about 11 years. I was still pre-surgery, and had transitioned to cardio #2 (#1 moved away). We were having the usual discussion of "How will I know when?" Cardio #2, wise beyond his years, simply told me "I have never had to tell an AS patient when they should have surgery. They always tell me when they are ready." He was completely right in my case. About a year later, I told him "I'm really tired of being tired. Let's do it." The rest is history.
 

Freebird

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Sep 27, 2019
Messages
119
The question of "When?" is always a very personal one. I was initially diagnosed at age 52, with moderate-to-severe AS. My only symptom was gradually diminishing exercise tolerance. I had NO other symptoms, being a daily runner/jogger for over 30 years, in addition to being a confirmed gym rat (weights, cardio, etc.) and just "living the dream." My first cardio and I used to play a game we called "Stump the Fellow." In this game, he would direct new cardiology fellows to interview me, examine me, then diagnose me. They almost always blew it, becoming very concerned when they heard what were my "normal" activities, then heard my mammoth, late-peaking murmur. I was more active than most men half my age, yet had this very ominous murmur. The message they were given was to never jump to conclusions, but to evaluate the entire patient, not just one test or another.

Fast forward about 11 years. I was still pre-surgery, and had transitioned to cardio #2 (#1 moved away). We were having the usual discussion of "How will I know when?" Cardio #2, wise beyond his years, simply told me "I have never had to tell an AS patient when they should have surgery. They always tell me when they are ready." He was completely right in my case. About a year later, I told him "I'm really tired of being tired. Let's do it." The rest is history.
What a great story. My appointment is a week from today and those are my thoughts exactly. I’m tired of being in the waiting room. It’s insidious.
 

bizinsider

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San Diego, CA
Great story. I've always viewed myself as asymptomatic, but I have always shown mild AS, but with significant regurgitation. I was on the every-three-month-scan-plan (alternating echo w/MRI) b/c of my aorta. As things with the aorta (notably the root) seemed to get more serious, I made a trip to the Cleveland Clinic, where I had an echo (the last one was 6 months ago) and CT w/contrast. This time the regurgitation shifted to severe and the AS to moderate, but the CT scan showed severe calcification. This time we also saw mild dilation in the LV (which had been there before) but also a small leak starting in the mitral valve. Bottom line: It's time and the Main Event is Wednesday. The kicker: The surgeon says that my body has probably compensated for the impact of AS and that I probably have more symptoms than I realize and that post-surgery I will have more energy. Which made my wife and me laugh because most people would say I am already too high energy. Point of all this: There are tons of variables and we're all different. But I love how your surgeon said you would know. In my case, we were just sick of having this rule our lives, as it was starting to do b/c of my aneurysm. And as much as we were focusing on the aneurysm, the surgeon said it's borderline for surgery, but the compelling factor is the valve. Yes, the aorta and root will be repaired, but doing the valve NOW will likely insure that my left ventricle and mitral valve repair themselves....and doing it now will avoid future damage. No one size fits all, that's for sure.
 

hx77

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What a great story. My appointment is a week from today and those are my thoughts exactly. I’m tired of being in the waiting room. It’s insidious.
Good discussion! I am also in the waiting room. I have a BAV with moderate to severe stenosis. My gradients have increased over the years and 5 months ago the peak was 38 and mean 23. My valve opening was 1.0-1.1 cm^2 and my peak velocity was 3.2. I am generally asymptomatic but I feel short of breath when walking up a hill or whenever my heart rate is over 110 or so. I am taking beta blocker and satin for my coronary artery disease. The medicines also help LV and thus the valve.

What types of valves you are considering? If it's a mechanical valve, it does not make much sense to postpone your surgery. I desire a biological valve so I have to plan accordingly. I hope to do TAVR+SVR+TAVR to sustain my life span. SVR could be an OHS or a minimal invasive surgery. SVR after TAVR is an unknown as TAVR have been used mostly for old patients up to last September and few of those patients need to do SVR after TAVR.

Medical insurance is also a key consideration for me. I am on my last year’s Cobra which requires only 10% co-pay. Next year I have to buy worse insurance from marketplace. But if my valve could sustain another 3 years, I will opt to postpone my surgery. By then I will be qualified for TAVR (in US, TAVR is only approved for BAV patients who are older than 60). Hopefully by then, more clinical data and technology advancements will allow me to make a better decision. On the other hand, if I have to undergo a surgery now (because of insurance), I might have to chose a mechanical valve. Life is full of choices.
 
Last edited:

Freebird

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Messages
119
Good discussion! I am also in the waiting room. I have a BAV with moderate to severe stenosis. My gradients have increased over the years and 5 months ago the peak was 38 and mean 23. My valve opening was 1.0-1.1 cm^2 and my peak velocity was 3.2. I am generally asymptomatic but I feel short of breath when walking up a hill or whenever my heart rate is over 110 or so. I am taking beta blocker and satin for my coronary artery disease. The medicines also help LV and thus the valve.

What types of valves you are considering? If it's a mechanical valve, it does not make much sense to postpone your surgery. I desire a biological valve so I have to plan accordingly. I hope to do TAVR+SVR+TAVR to sustain my life span. SVR could be an OHS or a minimal invasive surgery. SVR after TAVR is an unknown as TAVR have been used mostly for old patients up to last September and few of those patients need to do SVR after TAVR.

Medical insurance is also a key consideration for me. I am on my last year’s Cobra which requires only 10% co-pay. Next year I have to buy worse insurance from marketplace. But if my valve could sustain another 3 years, I will opt to postpone my surgery. By then I will be qualified for TAVR (in US, TAVR is only approved for BAV patients who are older than 60). Hopefully by then, more clinical data and technology advancements will allow me to make a better decision. On the other hand, if I have to undergo a surgery now (because of insurance), I might have to chose a mechanical valve. Life is full of choices.
I'm planning on going with a tissue valve. I won't be a candidate for TAVR as I also have an aneurysm. This is one of the reasons I've tried to delay surgery while being asymptomatic. I buy my insurance on the marketplace so the out of pocket will be steep, but I fear the political climate diminishing my access to healthcare (pre-existing conditions/out of pocket max/lifetime cap) so that is another consideration for me. My "plan" is SAVR+TAVR+SAVR or maybe SAVR+SAVR+TAVR due to the age I'd be for #3. I don't believe they can do TAVR twice but maybe one day? Who knows how it will all play out.
 

Astro

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Aug 26, 2019
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Great story. I've always viewed myself as asymptomatic, but I have always shown mild AS, but with significant regurgitation. I was on the every-three-month-scan-plan (alternating echo w/MRI) b/c of my aorta. As things with the aorta (notably the root) seemed to get more serious, I made a trip to the Cleveland Clinic, where I had an echo (the last one was 6 months ago) and CT w/contrast. This time the regurgitation shifted to severe and the AS to moderate, but the CT scan showed severe calcification. This time we also saw mild dilation in the LV (which had been there before) but also a small leak starting in the mitral valve. Bottom line: It's time and the Main Event is Wednesday. The kicker: The surgeon says that my body has probably compensated for the impact of AS and that I probably have more symptoms than I realize and that post-surgery I will have more energy. Which made my wife and me laugh because most people would say I am already too high energy. Point of all this: There are tons of variables and we're all different. But I love how your surgeon said you would know. In my case, we were just sick of having this rule our lives, as it was starting to do b/c of my aneurysm. And as much as we were focusing on the aneurysm, the surgeon said it's borderline for surgery, but the compelling factor is the valve. Yes, the aorta and root will be repaired, but doing the valve NOW will likely insure that my left ventricle and mitral valve repair themselves....and doing it now will avoid future damage. No one size fits all, that's for sure.
It certainly sounds like it’s time. Have an uneventful recovery.

The decreased exercise tolerance happens insidiously. Once you are on the road to recovery, it may be easier to see how much your valve has been affecting you.

Best wishes. When you are ready, let us know how you are going.
 

Astro

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Aug 26, 2019
Messages
141
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Adelaide, Australia
Good discussion! I am also in the waiting room. I have a BAV with moderate to severe stenosis. My gradients have increased over the years and 5 months ago the peak was 38 and mean 23. My valve opening was 1.0-1.1 cm^2 and my peak velocity was 3.2. I am generally asymptomatic but I feel short of breath when walking up a hill or whenever my heart rate is over 110 or so. I am taking beta blocker and satin for my coronary artery disease. The medicines also help LV and thus the valve.

What types of valves you are considering? If it's a mechanical valve, it does not make much sense to postpone your surgery. I desire a biological valve so I have to plan accordingly. I hope to do TAVR+SVR+TAVR to sustain my life span. SVR could be an OHS or a minimal invasive surgery. SVR after TAVR is an unknown as TAVR have been used mostly for old patients up to last September and few of those patients need to do SVR after TAVR.

Medical insurance is also a key consideration for me. I am on my last year’s Cobra which requires only 10% co-pay. Next year I have to buy worse insurance from marketplace. But if my valve could sustain another 3 years, I will opt to postpone my surgery. By then I will be qualified for TAVR (in US, TAVR is only approved for BAV patients who are older than 60). Hopefully by then, more clinical data and technology advancements will allow me to make a better decision. On the other hand, if I have to undergo a surgery now (because of insurance), I might have to chose a mechanical valve. Life is full of choices.
It sounds like you (sensibly) have been doing a lot of reading. Your plan sounds quite reasonable. Your numbers sound like you are in the moderate range, not wandering into the severe range yet. With a bit of luck, you may have a few years before anything has to be done.
 

jasond1979

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Dec 12, 2016
Messages
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san diego
Well I'm still in the waiting room. I'm currently experiencing no symptoms maybe not able to exercise as much. But as far as I can' tell from most studies as long as your not experiencing any symptoms your survival rate is pretty good. Its when you start experiencing symptoms that the death rate shoots up to 2% a month.
 

Freebird

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Well I'm still in the waiting room. I'm currently experiencing no symptoms maybe not able to exercise as much. But as far as I can' tell from most studies as long as your not experiencing any symptoms your survival rate is pretty good. Its when you start experiencing symptoms that the death rate shoots up to 2% a month.
I'm now just under 4 weeks post-op after having been asymptomatic in the waiting room for almost two years. Good to have it behind me and I can tell you that the lead-up stress, for me at least, was way worse than the surgery. Four days in the hospital flew by compared to those two years wondering if I was experiencing a symptom or if I might go downhill fast, as many have described. Covid kinda mucked things up a bit but here I am, happy to be alive and doing relatively well. Thus far I haven't really felt much different than before the surgery but I'm in the early days.
 

bizinsider

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San Diego, CA
I'm now just under 4 weeks post-op after having been asymptomatic in the waiting room for almost two years. Good to have it behind me and I can tell you that the lead-up stress, for me at least, was way worse than the surgery. Four days in the hospital flew by compared to those two years wondering if I was experiencing a symptom or if I might go downhill fast, as many have described. Covid kinda mucked things up a bit but here I am, happy to be alive and doing relatively well. Thus far I haven't really felt much different than before the surgery but I'm in the early days.
Freebird, congrats on the surgery and glad to hear you are doing well. Your comment on the lead-up vs the surgery has got to be one of the most consistent comments I've read in my years of reading valve-surgery forums. While some folks definitely have a harder time in recovery, the reality is that for many many of us the bark of surgery was worse than the bite. (Needles, notwithstanding!) I'm 7 months out and as I'll tell anybody who will listen if it wasn't for the fading 9" souvenir on my chest I would never know that so much had been tinkered with under the surface. I can't imagine having been in only 4 days but I also had a slight complication based on an incidental finding that was more of an annoyance than anything but kept me in for 8 days. Otherwise, I likely would have been out in 5 or 6. Post-surgery my goal in life has been to dispel the fear over this surgery. It's a BIG complicated surgery, no getting around that. But in the right hands - of someone who does it daily - it's a remarkable medical journey. I never cease to be amazed at what they do, how they do it. The videos of these surgeries blow my mind. Anyway, congrats.
 

Freebird

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Messages
119
Thanks for the kind words!

Not sure even now that I'd be ready to see a video of the surgery but I'm hoping the experience I had with this surgery will still be in my mind for my next one.

Today is my 6 week mark!
 

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