60YO woman with BAV and severe stenosis

[Pmacky09]

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.

 

[dick0236]

Anyway, I'm worried that my fear of surgery is clouding my awareness vis-a-vis symptoms.

Welcome. What does your Cardiologist say? Don't try to self-diagnose your condition.

 

[Chuck C]

Welcome to the forum!

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 would suggest that you err on the side of assuming that the shortness of breath is from your AS. I would not try to explain it away. It is natural to try to deny symptoms out of a desire to kick the can down the road and delay the inevitable.

There is a growing body of evidence to suggest that outcomes are much better if valve surgery is done once a patient becomes severe, rather than waiting for "severe with symptoms." So, even if your "out of breath" is just from the hill, you are likely better off getting the surgery sooner rather than waiting and risk irreversible heart damage. And, I suspect that in your heart of hearts you know that you are getting out of breath quicker than you did a year or two ago. People often tell themselves "I must just be getting older" or "I must just be out of shape". You are probably experiencing symptoms upon exertion. There is not much exertion in just walking the flats, although for some people just walking across the room is enough to get out of breath. You don't want to wait until it gets to that point.

If you spend some time reading the threads on this forum, you will find that Canada has major delays right now. Even folks that are severe with symptoms are made to wait and wait and then often get delayed multiple times. Now that you are severe, and likely have symptoms, better to do whatever you can to get yourself on the list as soon as you can.

Best of luck and please keep us posted.

 

[Pmacky09]

Welcome to the forum!


I would suggest that you err on the side of assuming that the shortness of breath is from your AS. I would not try to explain it away. It is natural to try to deny symptoms out of a desire to kick the can down the road and delay the inevitable.

There is a growing body of evidence to suggest that outcomes are muchj better if valve surgery is done once a patient becomes severe, rather than waiting for "severe with symptoms." So, even if you're "out of breath" is just from the hill, you are likely better off getting the surgery sooner rather than waiting and risk irreversible heart damage. And, I suspect that in your heart of hearts you know that you are getting out of breath quicker than you did a year or two ago. People often them themselves "I must just be getting older" or "I must just be out of shape". You are probably experiencing symptoms upon exertion. There is not much exertion in just walking the flats, although for some people just walking across the room is enough to get out of breath. You don't want to wait until it gets to that point.

If you spend some time reading the threads on this forum, you will find that Canada has major delays right now. Even folks that are severe with symptoms are made to wait and wait and then often get delayed multiple times. Now that you are severe, and likely have symptoms, better to do whatever you can to get yourself on the list as soon as you can.

Best of luck and please keep us posted.

Thanks, Chuck. What you're saying is resonating with me. I've always identified as an uber-healthy person (vegetarian, non-smoker, nonve,i0drinker

Welcome to the forum!


I would suggest that you err on the side of assuming that the shortness of breath is from your AS. I would not try to explain it away. It is natural to try to deny symptoms out of a desire to kick the can down the road and delay the inevitable.

There is a growing body of evidence to suggest that outcomes are muchj better if valve surgery is done once a patient becomes severe, rather than waiting for "severe with symptoms." So, even if you're "out of breath" is just from the hill, you are likely better off getting the surgery sooner rather than waiting and risk irreversible heart damage. And, I suspect that in your heart of hearts you know that you are getting out of breath quicker than you did a year or two ago. People often them themselves "I must just be getting older" or "I must just be out of shape". You are probably experiencing symptoms upon exertion. There is not much exertion in just walking the flats, although for some people just walking across the room is enough to get out of breath. You don't want to wait until it gets to that point.

If you spend some time reading the threads on this forum, you will find that Canada has major delays right now. Even folks that are severe with symptoms are made to wait and wait and then often get delayed multiple times. Now that you are severe, and likely have symptoms, better to do whatever you can to get yourself on the list as soon as you can.

Best of luck and please keep us posted.

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.

 

[Zoltania]

@Chuck C has given an excellent analysis, as usual. I would just add something I said in another thread a month or so ago, which is that being in the waiting room and hoping you won't need surgery is itself extremely stressful. I found that it was actually easier dealing with the real-life challenges of surgery than with the ones that were all in my head.

 

[Pmacky09]

Thank you. I appreciate the real talk here! And planning for surgery does sound marginally more appealing than bathing in anxiety for months!

 

[Chuck C]

I appreciate the reality check and will be calling my cardiologist on Monday to give him an update and get things moving along.

That sounds like a good plan. It is super important to let him know about symptoms and to update him if you feel symptoms becoming worse. That could potentially bump you up the list a little. Maybe not, but it does not hurt to give such updates and could expedite things.

Even if he feels it is time for surgery, based on what other members have shared, you might still be waiting months for the surgical consult. And even if the surgeon agrees it's time and gets you on the wait list, you could be several months on the wait list until it's your turn.

 

[Pmacky09]

So true, especially here in Canada where wait times are gobsmackingly long.

 

[pellicle]

Hi and welcome

Anyway, I'm worried that my fear of surgery is clouding my awareness vis-a-vis symptoms.

its probably a thing, but at least knowing that will assist you to mitigate it

Some things are just "how you're wired" and we can but turn our conscious mind towards that and help to soothe it.

 

[SiestaKeyJimmy]

Hi & Welcome to the club.!

This older guy is in the same confusing state as you. I was diagnosed with severe AS (Aortic Stenosis) over a year ago and found myself with the same concerns, that being, how do you know if you are having symptoms or not?

In checking with the American Heart Association, I found that “shortness of breath” is only one of 9. They have a “AS Symptom Tracker” sheet listing all 9 and allowing you to check the frequency of each symptom you have, and then take this sheet to your doctor. (Google to find the chart).

What I have learned is that we are in a kind of a“Twilight Zone”. My doc says the standard approach here is to wait until one has (I guess), most or all of the 9 symptoms and they are frequent (or worse).. Another interesting thing I learned is that apparently “severe” isn’t the worst stage, there’s a “Very Severe”.

Hope some of this info helps. (As I reach 1 ½ years from when I first crossed into severe, I will be at my docs in 2 weeks to see if we continue to “kick the can on down the road” or actually start doing something? )

 

[70sdiver]

I'll add that the stronger you are going in the stronger you will be healing up.I went thru the same thing for a few weeks before I called my doctor had surgery 6 weeks later.

 

[Pmacky09]

Hi & Welcome to the club.!

This older guy is in the same confusing state as you. I was diagnosed with severe AS (Aortic Stenosis) over a year ago and found myself with the same concerns, that being, how do you know if you are having symptoms or not?

In checking with the American Heart Association, I found that “shortness of breath” is only one of 9. They have a “AS Symptom Tracker” sheet listing all 9 and allowing you to check the frequency of each symptom you have, and then take this sheet to your doctor. (Google to find the chart).

What I have learned is that we are in a kind of a“Twilight Zone”. My doc says the standard approach here is to wait until one has (I guess), most or all of the 9 symptoms and they are frequent (or worse).. Another interesting thing I learned is that apparently “severe” isn’t the worst stage, there’s a “Very Severe”.

Hope some of this info helps. (As I reach 1 ½ years from when I first crossed into severe, I will be at my docs in 2 weeks to see if we continue to “kick the can on down the road” or actually start doing something? )

This is really helpful, thank you! It feels a lot like the Twilight Zone.

1.5 years? My cardiologist suggested I would have surgery before the end of the year. I can’t imagine. What are your symptoms?

 

[Croooser]

I was mostly without symptoms but when my test results declined into severe - i.e. .9 on the aortic valve (and 5.0 on the aortic aneurysm), I got a second opinion with a second set of tests to confirm that the test results were accurate. They were confirmed and I made the appointment for the surgery.

I subscribed to the approach that earlier avoids any permanent damage and facilitates a better recovery.

 

[Lynn]

I will weigh in on a couple of points Pmacky09 as our situations are similar. I would agree with some points made by others, but take issue with the wait times. My stenosis progressed from moderate to severe at age 59. Like you, I was otherwise healthy and I good shape. I also live in BC.

Firstly, severe stenosis is considered an emergent surgery in BC. My wait time form diagnosis to surgery was 8 weeks, and the only reason it took that long was that cardiac catheterization lab was backed up due to the pandemic (2021). The same day I had a call from the cath lab scheduling that procedure, I also had a call from the surgeon. Surgery was 2 days after the cath. I believe cardiac surgery wait times have improved since 2021, but I would also note that it depends a bit on where in the province you live and where you prefer to have surgery. Others may not be aware, but BC is a large province, with population concentrated in a couple of areas, so people living in remote areas may need to travel for heart surgery. Folks may also not be aware that health care in Canada is a provincial responsibility and some provinces do a better job than others. My experience is that BC does a great job with heart surgery.

If you aren’t being referred to a surgeon in a timely basis get in touch with your cardiologist, it should happen. Don’t be afraid to advocate for what you need.


With respect to shortness of breath, I did begin to notice some changes in the last 6 months particularly. I would be short of breath very quickly when bending over. I was also acutely short of breath when I packed anything at all heavy. Theses symptoms were different from what I had experienced previously. Also, when hiking, it would take me much longer to recover after a large hill. .

 

[SiestaKeyJimmy]

Pmacky - please check your "Conversations" (at the top, right of your screen - that little envelope icon)

 

[Lynn]

I will weigh in on a couple of points Pmacky09 as our situations are similar. I would agree with some points made by others, but take issue with the wait times. My stenosis progressed from moderate to severe at age 59. Like you, I was otherwise healthy and I good shape. I also live in BC.

Firstly, severe stenosis is considered an emergent surgery in BC. My wait time form diagnosis to surgery was 8 weeks, and the only reason it took that long was that cardiac catheterization lab was backed up due to the pandemic (2021). The same day I had a call from the cath lab scheduling that procedure, I also had a call from the surgeon. Surgery was 2 days after the cath. I believe cardiac surgery wait times have improved since 2021, but I would also note that it depends a bit on where in the province you live and where you prefer to have surgery. Others may not be aware, but BC is a large province, with population concentrated in a couple of areas, so people living in remote areas may need to travel for heart surgery. Folks may also not be aware that health care in Canada is a provincial responsibility and some provinces do a better job than others. My experience is that BC does a great job with heart surgery.

If you aren’t being referred to a surgeon in a timely basis get in your cardiologist, it should happen. Don’t be afraid to advocate for what you need.


With respect to shortness of breath, I did begin to notice some changes in the last 6 months particularly. I would be short of breath very quickly when bending over. I was also acutely short of breath when I packed anything at all heavy. Theses symptoms were different from what I had experienced previously. Also, when hiking, it would take me much longer to recover after a large hill. .

 

[Lynn]

As a follow up, I live on Vancouver Island and I just checked the surgical wait times, 50% of open heart surgeries completed with 2 weeks, 90% completed within 4-9 weeks depending upon the surgeon. If you go to the website you can see by region and surgeon. Weirdly it is listed under “o” for “open heart surgery” lol. Took me a bit to find it.

 

[Chuck C]

My doc says the standard approach here is to wait until one has (I guess), most or all of the 9 symptoms and they are frequent (or worse)..

I don't know if you're accurately indicating what your doctor is telling you, but if you are quoting him accurately, I would encourage you to get a second opinion. Respectfully, this is the first I have heard anything close to this and is not at all consistent with the current guidelines. Please see the two publications linked below and note the graph below taken from one of the publications.

The guidelines call for surgery for those with severe AS if they develop symptoms. Once AS symptoms present, survival drops literally off a cliff if there is no surgical intervention. The graph below predicts life expectancy without intervention. As can be seen, life expectancy depends on which symptoms are encountered. Other factors might also come into play with respect to getting surgery before symptoms, such as diastolic or systolic dysfunction and if LVH reaches certain thresholds or if ejection fraction drops below 50%.

https://www.ahajournals.org/doi/10.1161/circresaha.113.300156

Also:

" Survival is excellent during the asymptomatic phase, but mortality is more than 90% within a few years after the onset of symptoms.[2][3][4][5][6][7]"

"AVR is recommended in adults with symptomatic aortic stenosis, even if the symptoms are mild."

https://www.ncbi.nlm.nih.gov/books/NBK557628/

 

[SiestaKeyJimmy]

Hi Chuck C,

I appreciate your response(s)! I have to leave right now but will respond to you tomorrow!

 

[NorthVanJosh]

Welcome, I'm also in BC and awaiting my consult to lock in a surgery date. As others have mentioned the wait time in Canada is disgustingly long. I have BAV and severe regurgitation and have been waiting over 2 months to get my consult date. Hoping you get yours quickly! Are you going to St. Pauls for your surgery? Thats where I'm going it seems.