I am a new poster, but have been perusing this site for months.
I am so grateful to all participants who make time to contribute their experience and/or expertise despite
their personal challenges. It's not only informative but helps me manage my anxiety.
I am 61 and discovered my murmur around 2000. I reported to my GP and asthma doc in '02 that it was much worse, leading to the dx of aortic stenosis - it was many years later they categorized it as BAV. I remained blissfully ignorant that it would result in surgery until 2010 when things began to deteriorate. That ignorance was useful in that I was very active and unworried.
Fast forward to Mayo Clinic 5/13 for my annual cardiology consult. He said I would need surgery in 1-3 years.
(note: one down.) Status was characterized as moderate/severe calcific aortic valve stenosis, AVA = 1.05 cm2 with trivial regurg., Ejection Fraction 64% , AV velocity 3.5, AV mean gradient 33mmHg, LV stroke volume 50cc/m2
Other findings: Right vent syst pressure=28 mmHg, Left atrial enlargement, left atrial volume index 36 cc/m2, mild tricuspid valve regurg., borderline ascending aorta dilation 36 mm at midlevel, small circumferential pericardial effusion. They did a stress echo and said my peak O2 consumption was in the athletic range with a normal HR response but a slightly blunted BP on exertion for an unclear reason. They directed a f/u echo locally to check the pericardial effusion and it was unchanged as of 9/13 but that echo had AVA at 1.
They said I could keep exercising but keep HR below 130 (I typically have low BP and HR in 50 range. )
We were going on the assumption that I am asymptomatic although I had reported progressively worsening fatigue
for each check-in over the last three years and they have dismissed the fatigue as something other than my heart, even checking me for Lymes and sleep apnea, all negative. I have noticed many posters have talked about their fatigue being dismissed as due to something other than a symptom of BAV. First question - why is this the case given so many BAVers have the same experience?
I am scheduled for current annual check-in at CC with cardiologist and surgeon in 3 weeks. I am either mildly symptomatic or moderately overreacting. My capacity during cardio workouts has definitely diminished. Working harder and doing less, as one poster put it. Possibly infrequently lightheaded during exertion - so subtle- more like temporarily woozy; Mild transient windedness sprinting up stairs (I used to take them two at a time,) various left chest discomfort - or more likely mild aches due to yoga? Symptoms only seem significant in light of my fear of stressing my Left ventricle beyond the ability to remodel post-op vs continuing to stay fit .
In any case, I eagerly anticipate the new numbers. I am scheduled for my first gated CAT scan of aorta also an echo, ECG, labs and consultation. No stress echo this time.
IF I have deteriorated according stats, I should be in the severe range but not critical and will have another year to stress and second guess. I sure hope it doesn't come down to my own subjective experience of
symptoms vs no symptoms. I guess I will only have clarity if the numbers have deteriorated beyond statistical projections and they alone are bad enough to send me shopping for valves. I really resonate with all of you that say they dread the surgery while at the same time wanting to get it over with.
If you've made it this far - thank you for your patience. I still have a few more questions.
I've searched for examples of BAVrs that have pre-op pericardial effusions (reported on my last three annual echos) and have found nothing. Does anyone have any experience with that?
I plan to travel for surgery (whenever!) and the trip is long and involves 2 or 3 changes. Has anyone undertaken such a trip post-op and how did it go?
Thank you all again for sharing your knowledge and experience. Bonny
I am so grateful to all participants who make time to contribute their experience and/or expertise despite
their personal challenges. It's not only informative but helps me manage my anxiety.
I am 61 and discovered my murmur around 2000. I reported to my GP and asthma doc in '02 that it was much worse, leading to the dx of aortic stenosis - it was many years later they categorized it as BAV. I remained blissfully ignorant that it would result in surgery until 2010 when things began to deteriorate. That ignorance was useful in that I was very active and unworried.
Fast forward to Mayo Clinic 5/13 for my annual cardiology consult. He said I would need surgery in 1-3 years.
(note: one down.) Status was characterized as moderate/severe calcific aortic valve stenosis, AVA = 1.05 cm2 with trivial regurg., Ejection Fraction 64% , AV velocity 3.5, AV mean gradient 33mmHg, LV stroke volume 50cc/m2
Other findings: Right vent syst pressure=28 mmHg, Left atrial enlargement, left atrial volume index 36 cc/m2, mild tricuspid valve regurg., borderline ascending aorta dilation 36 mm at midlevel, small circumferential pericardial effusion. They did a stress echo and said my peak O2 consumption was in the athletic range with a normal HR response but a slightly blunted BP on exertion for an unclear reason. They directed a f/u echo locally to check the pericardial effusion and it was unchanged as of 9/13 but that echo had AVA at 1.
They said I could keep exercising but keep HR below 130 (I typically have low BP and HR in 50 range. )
We were going on the assumption that I am asymptomatic although I had reported progressively worsening fatigue
for each check-in over the last three years and they have dismissed the fatigue as something other than my heart, even checking me for Lymes and sleep apnea, all negative. I have noticed many posters have talked about their fatigue being dismissed as due to something other than a symptom of BAV. First question - why is this the case given so many BAVers have the same experience?
I am scheduled for current annual check-in at CC with cardiologist and surgeon in 3 weeks. I am either mildly symptomatic or moderately overreacting. My capacity during cardio workouts has definitely diminished. Working harder and doing less, as one poster put it. Possibly infrequently lightheaded during exertion - so subtle- more like temporarily woozy; Mild transient windedness sprinting up stairs (I used to take them two at a time,) various left chest discomfort - or more likely mild aches due to yoga? Symptoms only seem significant in light of my fear of stressing my Left ventricle beyond the ability to remodel post-op vs continuing to stay fit .
In any case, I eagerly anticipate the new numbers. I am scheduled for my first gated CAT scan of aorta also an echo, ECG, labs and consultation. No stress echo this time.
IF I have deteriorated according stats, I should be in the severe range but not critical and will have another year to stress and second guess. I sure hope it doesn't come down to my own subjective experience of
symptoms vs no symptoms. I guess I will only have clarity if the numbers have deteriorated beyond statistical projections and they alone are bad enough to send me shopping for valves. I really resonate with all of you that say they dread the surgery while at the same time wanting to get it over with.
If you've made it this far - thank you for your patience. I still have a few more questions.
I've searched for examples of BAVrs that have pre-op pericardial effusions (reported on my last three annual echos) and have found nothing. Does anyone have any experience with that?
I plan to travel for surgery (whenever!) and the trip is long and involves 2 or 3 changes. Has anyone undertaken such a trip post-op and how did it go?
Thank you all again for sharing your knowledge and experience. Bonny
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