60YO woman with BAV and severe stenosis

[Pmacky09]

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. .

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.

 

[Pmacky09]

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.

Thanks, Josh! I have no idea where I might go for surgery. My cardiologist is in North Van. I hope you get yours quickly too!

 

[SiestaKeyJimmy]

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.

 

[Lynn]

Best of luck Pmacky09. I would agree with what others that surgery off with severe stenosis doesn’t make much sense. I hope once your cardio understands you are having symptoms, things will move along quickly for you.

Another symptom I forgot to mention; it wasn’t that I couldn’t jog or get up a hill, but there was a weird feeling if trying hard to breath in air and that it just wasn’t working. No matter how hard my lungs worked, I still felt short of breath. I also found my legs got tired faster. Which was weird based on my fitness level.

Again, wishing a speedy surgery and recovery. Keep us up to date.

 

[Nesphito]

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?

It’s subtle at first. I thought that I hadn’t been working out as much as I should’ve been at first. If you’re active and you notice you’re more tired than normal. Then that’s your answer.

Your symptoms can progress fast too. My tiredness was barely noticeable at first, but now I sometimes notice just going up my stairs.

 

[tom in MO]

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.

 

[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? )

Best of luck Pmacky09. I would agree with what others that surgery off with severe stenosis doesn’t make much sense. I hope once your cardio understands you are having symptoms, things will move along quickly for you.

Another symptom I forgot to mention; it wasn’t that I couldn’t jog or get up a hill, but there was a weird feeling if trying hard to breath in air and that it just wasn’t working. No matter how hard my lungs worked, I still felt short of breath. I also found my legs got tired faster. Which was weird based on my fitness level.

Again, wishing a speedy surgery and recovery. Keep us up to date.

Thanks, Lynn. I was doing a few 5-7km runs a week up until October of last year. Same kind of thing; something just felt off and WAY too out of breath for the effort. I switched to walking (at a fast pace) to keep up my cardio fitness, which feels better.

 

[Pmacky09]

It’s subtle at first. I thought that I hadn’t been working out as much as I should’ve been at first. If you’re active and you notice you’re more tired than normal. Then that’s your answer.

Your symptoms can progress fast too. My tiredness was barely noticeable at first, but now I sometimes notice just going up my stairs.

Thank you, Nesphito. I noticed I was winded the other day going up a bigger flight of stairs too.

 

[SwansCity1912]

The challenge I found initially was deciding between real symptoms and those created by a degree of anxiety about the whole situation. Turns out I’d been dismissing my symptoms with other plausible reasons with a little anxiety thrown in as well.

I’d been a big gym goer and felt my cardio fitness decline significantly over a period of months. I’ve always hated cardio anyway so assumed it was that plus I didn’t put enough effort in to it. Just one example of many but I’ve found it easy to dismiss things, questions if your mind is creating them and everything in between.

 

[Chuck C]

Turns out I’d been dismissing my symptoms with other plausible reasons with a little anxiety thrown in as well.

Thanks for sharing your experience. This is very common. Very often people don't want to believe that what they are experiencing is because of their worsening valve disease. That generally means it's time for surgery, and that can be a hard pill to swallow. It can temporarily make one feel better to believe it's something else. But, this just delays the inevitable and this type of denial can have a very big price. At the earliest signs of sypmtoms, best to call your cardiologist and let them know so they can get current imagery and check things out. If it's something else, then let them be the ones to determine this.

 

[Pmacky09]

The challenge I found initially was deciding between real symptoms and those created by a degree of anxiety about the whole situation. Turns out I’d been dismissing my symptoms with other plausible reasons with a little anxiety thrown in as well.

I’d been a big gym goer and felt my cardio fitness decline significantly over a period of months. I’ve always hated cardio anyway so assumed it was that plus I didn’t put enough effort in to it. Just one example of many but I’ve found it easy to dismiss things, questions if your mind is creating them and everything in between.

I can relate SwansCity1912! We moved to BC in 2021, so I attributed the SOB to running/hiking in the mountains versus being mostly on flats. I'm now scheduled for an angiogram, so things are moving forward.

 

[Pmacky09]

Thanks for sharing your experience. This is very common. Very often people don't want to believe that what they are experiencing is because of their worsening valve disease. That generally means it's time for surgery, and that can be a hard pill to swallow. It can temporarily make one feel better to believe it's something else. But, this just delays the inevitable and this type of denial can have a very big price. At the earliest signs of sypmtoms, best to call your cardiologist and let them know so they can get current imagery and check things out. If it's something else, then let them be the ones to determine this.

Well said, Chuck C! So grateful for all the encouragement and real talk in this forum.

 

[SwansCity1912]

I can relate SwansCity1912! We moved to BC in 2021, so I attributed the SOB to running/hiking in the mountains versus being mostly on flats. I'm now scheduled for an angiogram, so things are moving forward.

Good luck! I’m 4 months away from surgery based on a rough timeline from January. TOE/TEE scheduled Friday (second attempt) which should confirm or otherwise the timeline.

 

[Pmacky09]

Thank you! I hope everything goes smoothly for you.

 

[Pmacky09]

Thanks, @NorthVanJosh. I was just referred for an angiogram at St. Pauls and the cardiologist seemed to think it would take 4-6 weeks to get that done.

 

[Timmay]

My simpleton thought …

If you’re severe, you KNOW you’re gonna need to have surgery. If you kick the can down the road you run the risk of having a bad outcome. You don’t know what tomorrow holds. Tomorrow could hold those symptoms that you don’t want. Again - you already know you need surgery and that you can’t avoid it. So just go get it before you have symptoms.



Maybe I’m oversimplifying it though.

(By “you” in my post I mean the plural you … everyone … not specifically the original poster)

 

[Pmacky09]

Wise words, @Timmay! Getting things teed up now with my cardiologist. Appreciate the reality check!

 

[pellicle]

By “you” in my post I mean the plural you … everyone …

Third person infinitive... in Australia some people can be heard to use yous.
"would yous guys shut up"

 

[Lynn]

That’s great Pmacky. As soon as I had my angio date scheduled, the surgeons office called to set up a consult. Surgery said they had been waiting in the angio date for me so they could move forward. At the consult we scheduled surgery for 2 days post the angio. The day in between was the standard day of tests and surgery orientation as well as consults with the anesthesiologist and physio. It was all very organized and moved very quickly once I had the angio date.

I hope it moves that swiftly for you.

 

[Pmacky09]

That’s great Pmacky. As soon as I had my angio date scheduled, the surgeons office called to set up a consult. Surgery said they had been waiting in the angio date for me so they could move forward. At the consult we scheduled surgery for 2 days post the angio. The day in between was the standard day of tests and surgery orientation as well as consults with the anesthesiologist and physio. It was all very organized and moved very quickly once I had the angio date.

I hope it moves that swiftly for you.

That’s wonderful to hear. And very encouraging fingers crossed for a smooth process.