60YO woman with BAV and severe stenosis

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I've been lurking in this forum for years, and now that surgery is definitely in my future, I figured it was time to take the plunge.

I just crossed the threshold into severe stenosis of my aortic valve but think I may be in denial about symptoms. How do I tell the difference between the normal shortness of breath that comes from climbing a hill versus the shortness of breath due to stenosis? I'm quite active and in general, my energy is very good, but I now realize that the shortness of breath that comes from going up a hill is pretty consistent (yet I can hike for 10km no problem). I also read in this forum about someone who had pressure on the left side of their chest, which I also have but never tied it to the valve issue.

Anyway, I'm worried that my fear of surgery is clouding my awareness vis-a-vis symptoms.
I'm in the same boat as you. I started showing signs of severe as far back as September of 2022 and definitely in 2023 I was able to delay it because in September I did a treadmill test who showed I was still borderline severe moderate and I was absolutely killing it on the treadmill test. In December and February I did more Echo so pretty much put me into here in every category yet I'm still feeling really good and less than a week before surgery I'm still having second doubt so that I'm starting to show damage to my heart as well it's a difficult thing to push yourself in the surgery when you're feeling good and it is hard to know whether the symptoms are acid reflux disease heart heart valve stress other medication you might be taking the weather could be any one of a million things. Best to get a treadmill test and other echo or go over things with your doctor. I agree with Chuck that the prevailing wisdom now is to go into surgery strong before symptoms start in irreversible damage or death or a stroke happens. I'm presently due to go into the hospital and just 5 days surgery and just 6 days I'm pretty much in denial myself but unless something happens if the 11th hour it's going to happen next week hope you're doing good. Sorry about the system in Canada I live overseas and I'm paying cash which is good in that sense I can do surgery on demand
 
Thank you so much, Lynn. I'm happy to hear wait times are not an issue. I think my cardiologist was taking his cues from me, and admittedly there was some denial going, so I will update him asap. The shortness of breath is def there, especially during hikes up the mountain.
The shortness of breath thing I think I felt a little bit of that and I think fatigue kicks in and I think we all think it's due to aging insomnia medications you might be on stress fatigue other medical conditions.
 
Chuck, Thanks for posting that “Iconic figure”, by Ross and Braunwald in their 1968 article. (FYI - I have studied and researched it over a few years, supposedly, it came out of a “sketch” on a napkin that they thought was the best “visual-aid” to help explain Aortic Stenosis in their presentations. My understanding is that it was not a result of actual data, simply a great way to convey their findings.

Anyway, regardless of how accurate it actually is (and of course it is now totally outdated and you’ve likely seen the newer version where the “onset of severe symptoms” appears about 80). In any case, it still conveys the key points, as you point out.

But it also highlights the difficulty that anyone in my “twilight zone” faces, that being, how do I know when my “symptoms” become “Severe”? (Severe enough to warrant some medical intervention?) That’s what many of us struggle with. That’s why I suggested the “AS Symptom Tracker” may help.

On my doctor, let me more accurately present what he is telling me. He doesn’t make decisions alone, the whole cardiac staff (including the surgeon who did my quad by-pass 7 years ago), all meet and make joint decisions on each patient. What he said was, they are often hesitant to recommend intervention when the patient doesn’t present with relatively serious symptoms. (Pretty much like the chart says, “onset of severe symptoms”. This is totally understandable in our modern world of possible legal actions.

In my situation, I had an Echo last week, and will be seeing my cardio doc next week, to hear of the results and his recommendations.
That's interesting I'm living in an overseas here and most of the doctors are reticent to recommend surgery over the surgeon seem to be a little over eager at the private hospitals perhaps because of financial incentive. I'm going to see my surgeon on Sunday just 3 days before I end of the hospital just 4 days before surgery actually not my surgeon I'm seeing a cardiologist and make sure that they show me actual numbers that confirms that I'm firmly in severe and convince me why I should do the surgery.
 
Many people don't have symptoms before surgery. For me I got my first symptom after I was told to schedule surgery based upon only my echo results. My cardio said to get it done soon so I don't "suffer the symptom known as sudden death." My surgeon said it was good I hadn't waited since the valve was ready to fail.
Hey Tom I'm hearing that too from others the first symptom could be death. And if you are a fitness fanatic and you're extremely good at taking care of your health your body can compensate for a while but at some point you're going to risk permanently damaging heart like I probably maybe already have as well
 
Many people don't have symptoms before surgery. For me I got my first symptom after I was told to schedule surgery based upon only my echo results. My cardio said to get it done soon so I don't "suffer the symptom known as sudden death." My surgeon said it was good I hadn't waited since the valve was ready to fail.
Hey Tom I'm hearing that too from others the first symptom could be death. And if you are a fitness fanatic and you're extremely good at taking care of your health your body can compensate for a while but at some point you're going to risk permanently damaging heart like I probably maybe already have as well
Thanks, Chuck. What you're saying is resonating with me. I've always identified as an uber-healthy person (vegetarian, non-smoker, nonve,i0drinker

I've always identified as healthy: active, vegetarian, non-smoker, non-drinker, so I assumed I would be one of the lucky ones who would never need surgery.

I appreciate the reality check and will be calling my cardiologist on Monday to give him an update and get things moving along.
I'm vegan non-smoker Don't drink don't even do caffeine exercise everyday take meds take supplements meditate work on the psychological mental spiritual Mind Body side of things but still eventually age bad luck prior lifestyle errors everything can add up after a while the longer you're around I'm 61 and my body's been caving in on me since my 30s
 
I'm in the same boat as you. I started showing signs of severe as far back as September of 2022 and definitely in 2023 I was able to delay it because in September I did a treadmill test who showed I was still borderline severe moderate and I was absolutely killing it on the treadmill test. In December and February I did more Echo so pretty much put me into here in every category yet I'm still feeling really good and less than a week before surgery I'm still having second doubt so that I'm starting to show damage to my heart as well it's a difficult thing to push yourself in the surgery when you're feeling good and it is hard to know whether the symptoms are acid reflux disease heart heart valve stress other medication you might be taking the weather could be any one of a million things. Best to get a treadmill test and other echo or go over things with your doctor. I agree with Chuck that the prevailing wisdom now is to go into surgery strong before symptoms start in irreversible damage or death or a stroke happens. I'm presently due to go into the hospital and just 5 days surgery and just 6 days I'm pretty much in denial myself but unless something happens if the 11th hour it's going to happen next week hope you're doing good. Sorry about the system in Canada I live overseas and I'm paying cash which is good in that sense I can do surgery on demand
Thanks for sharing @newarrior. I'm on tap for an angiogram and the cardiologist says surgery will probably happen within days of that. Now that I know it's happening, I want to get it done and move forward with the next chapter. Thinking good thoughts for you and hope all goes well.
 
Hey, I'm back. I’ve just completed another Echo and met with my Cardio Doc. He confirmed that (once again) I have “severe aortic stenosis”. (I have now been “severe” for over one year, and I have to say, it has not been that bad, fatigue is my worst symptom.

Anyway, my time has run out. He has me scheduled to begin the “process”. In 2 weeks I will get a “Cath Lab” visit where they will check if I have any other blockages and put in “stents” if I need them. That same day I get a “TEE” Echo (or something like that). Then the docs review my data and I get a CT scan. After all that, I have to meet with a surgeon and review possible options. Only after all that will I know exactly how I will be treated
 
Hey, I'm back. I’ve just completed another Echo and met with my Cardio Doc. He confirmed that (once again) I have “severe aortic stenosis”. (I have now been “severe” for over one year, and I have to say, it has not been that bad, fatigue is my worst symptom.

Anyway, my time has run out. He has me scheduled to begin the “process”. In 2 weeks I will get a “Cath Lab” visit where they will check if I have any other blockages and put in “stents” if I need them. That same day I get a “TEE” Echo (or something like that). Then the docs review my data and I get a CT scan. After all that, I have to meet with a surgeon and review possible options. Only after all that will I know exactly how I will be treated
Good to hear things are progressing @SiestaKeyJimmy and sounds like you’re getting excellent care. Godspeed and keep us posted!!
 
Hey, I'm back. I’ve just completed another Echo and met with my Cardio Doc. He confirmed that (once again) I have “severe aortic stenosis”. (I have now been “severe” for over one year, and I have to say, it has not been that bad, fatigue is my worst symptom.

Anyway, my time has run out. He has me scheduled to begin the “process”. In 2 weeks I will get a “Cath Lab” visit where they will check if I have any other blockages and put in “stents” if I need them. That same day I get a “TEE” Echo (or something like that). Then the docs review my data and I get a CT scan. After all that, I have to meet with a surgeon and review possible options. Only after all that will I know exactly how I will be treated
Thanks for the update Jimmy. Crossing fingers that you qualify for TAVR. At 84, it is probably the best way to go, if you are eligible.
 
I've been lurking in this forum for years, and now that surgery is definitely in my future, I figured it was time to take the plunge.

I just crossed the threshold into severe stenosis of my aortic valve but think I may be in denial about symptoms. How do I tell the difference between the normal shortness of breath that comes from climbing a hill versus the shortness of breath due to stenosis? I'm quite active and in general, my energy is very good, but I now realize that the shortness of breath that comes from going up a hill is pretty consistent (yet I can hike for 10km no problem). I also read in this forum about someone who had pressure on the left side of their chest, which I also have but never tied it to the valve issue.

Anyway, I'm worried that my fear of surgery is clouding my awareness vis-a-vis symptoms.
I get it. . I was in the same boat…lot of anxiety waiting with little to no symptoms for YEARS until age 49 . .had my AV( minimal 3inch incision, mechanical- On-X valve, which has a lower warfarin dosing protocol() 13 years ago and it was not until after the surgery I could really tell a difference in my exercise endurance. Odds are it has been creeping up on you, so you dont even realize where you have been compromised. I studied and studied my options in the years leading up to the surgery, even considering the Ross procedure at one point. What I learned was to watch for 2 criteria: 1) symptoms while exercising, especially fainting 2) aortic diameter from your ultrasound getting below 1 (Mine was .7 at surgery after sitting at .9 for years). Once you get below 1 diameter, you aorta can narrow more quickly so keep an eye on it.

Post surgery and years down the road— I would do it all again exactly the same way. I have had a very good result and today forget I even had the AVR most days.

Good luck! This is a great opportunity for you longevity.
 
2) aortic diameter from your ultrasound getting below 1 (Mine was .7 at surgery after sitting at .9 for years). Once you get below 1 diameter, you aorta can narrow more quickly so keep an eye on it.
I believe that you meant to say aortic valve area, which is measured in squared centimeters. Aortic diameter has to do with measurement for aortic aneurysm.
 
I get it. . I was in the same boat…lot of anxiety waiting with little to no symptoms for YEARS until age 49 . .had my AV( minimal 3inch incision, mechanical- On-X valve, which has a lower warfarin dosing protocol() 13 years ago and it was not until after the surgery I could really tell a difference in my exercise endurance. Odds are it has been creeping up on you, so you dont even realize where you have been compromised. I studied and studied my options in the years leading up to the surgery, even considering the Ross procedure at one point. What I learned was to watch for 2 criteria: 1) symptoms while exercising, especially fainting 2) aortic diameter from your ultrasound getting below 1 (Mine was .7 at surgery after sitting at .9 for years). Once you get below 1 diameter, you aorta can narrow more quickly so keep an eye on it.

Post surgery and years down the road— I would do it all again exactly the same way. I have had a very good result and today forget I even had the AVR most days.

Good luck! This is a great opportunity for you longevity.
I get it. . I was in the same boat…lot of anxiety waiting with little to no symptoms for YEARS until age 49 . .had my AV( minimal 3inch incision, mechanical- On-X valve, which has a lower warfarin dosing protocol() 13 years ago and it was not until after the surgery I could really tell a difference in my exercise endurance. Odds are it has been creeping up on you, so you dont even realize where you have been compromised. I studied and studied my options in the years leading up to the surgery, even considering the Ross procedure at one point. What I learned was to watch for 2 criteria: 1) symptoms while exercising, especially fainting 2) aortic diameter from your ultrasound getting below 1 (Mine was .7 at surgery after sitting at .9 for years). Once you get below 1 diameter, you aorta can narrow more quickly so keep an eye on it.

Post surgery and years down the road— I would do it all again exactly the same way. I have had a very good result and today forget I even had the AVR most days.

Good luck! This is a great opportunity for you longevity.
Thanks @drivetopless It definitely has been creeping up on me, and I am certainly more fatigued in the past month - there's no denying it now as I've had more naps in the past month than I have ever had in my life! Shortness of breath is also more intense when exercising (especially hiking our big British Columbia mountains!) Have not fainted, thankfully, and I could do without experiencing that symptom! At this point, I'm actually looking forward to surgery. The incredible support and information from this group is invaluable!
 
I believe that you meant to say aortic valve area, which is measured in squared centimeters. Aortic diameter has to do with measurement for aortic aneurysm.
Most recent echo shows AVA of 0.8cm2.
I believe that you meant to say aortic valve area, which is measured in squared centimeters. Aortic diameter has to do with measurement for aortic aneurysm.
 
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