Hi from Brazil

[Jack Julles Jackson]

Hi Jack.

Passing out is a severe symptom of having AS. This is information which you did not mention in your original post and it is significant. Once one gets to the point where they have aortic stenosis and they are passing out, it is time for surgery and not delay. Had you gone in to get things checked out when this first happened to you last December, your cardiologist likely would have sent you for surgery right away, because the mortality rate once a person has severe AS and symptoms is very high, especially if the symptom is fainting, also known as syncope. The survival curve literally drops off a cliff once the patient gets to this point and does not get surgery. The good news, so far you have been one of the lucky ones and very glad that you are still with us. Please see graph below and note the average survival once a person has severe AS with syncope.



View attachment 889534

It is not just the risk of dying, if you wait too long after the onset of serious symptoms, your heart may not fully remodel, which could lead to serious complications as you age, if not immediately. Hopefully at this point you understand that when you first fainted 8 months ago that you should have taken it seriously and not waited for another fainting episode. Luckily, you are young. The heart of a person who is young tends to do very well at remodeling after surgery and going back to mostly normal. So, this time you may get a free pass. But, please take a mental note of it and have your echo follow up appointments after surgery to not wait so long next time. In that your surgeon is wanting to give you a tissue valve, if you do go that route, you will have future procedures, maybe in just a few years. Going forward, you want to be like clockwork with those echos and if anything feels off in between echos, get seen right away. You are fortunate that you are not a statistic reflected in the above graph. I would not tempt fate again.

Also, in my post above I suggested that you get a second opinion. Now that you have made us aware that you have had multiple fainting episodes, I believe this should be taken into consideration. If you can get a second opinion this week or next, great. But, if you need to wait 2 or 3 months for a second opinion, in my view it is more important to move forward with your surgery than to wait that long. Also, it is not the time to spend months deciding on which valve to get. At this point, make your decision and don't look back or second guess your choice, but don't delay.

I don't mean to scare you with the above stats. As long as you don't delay you should do fine, especially given your age. Waiting 10 months after syncope to get surgery is not a good plan for anyone with severe AS, but you get the "I'm young so I got away with it" pass this time around, for which we are all very glad. Just be aware that you have a very serious condition, known as valve disease and will need to take any symptoms very seriously going forward after surgery. Yes, it is a very serious condition, but the good news is that it has a highly successful solution-modern valve surgery. But, it is just really important to understand that getting a good outcome from this highly successful surgery is very dependent on getting surgery on time and not waiting too long.

Good luck in your upcoming procedure and please keep us posted as to your valve choice and recovery. We all look forward to seeing you on the other side.

Wow. You gave me lots of stuff to think.

Im going to see two different cardiologists this week. One of them, tomorrow. I dont know other surgeons, but I'll ask indications. In my region, Rio de Janeiro area, there are lots of them, but I prefer to go on indications.

Im already doing exams. I had an echo two weeks ago, that take me to the surgeon last week. oh, and lots of electrocardios.

About not related symptoms, I feel dizzy sometimes. But the doctors I had seen told me that can be anxiety because, in my condition, I only suppose to feel the related synthoms on doing hard exercises, and I felt that when I was sittin and not doing nothing. And I was doing treatment for anxiety before that. But you alerted me to keep this in mind when I talk to all these doctors.

Thanks for your concern, this place is like some kind of brotherhood.
PS: Sorry for the lots of corrections. English is not my native language.

 

[Jack Julles Jackson]

Hi Jack.

Passing out is a severe symptom of having AS. This is information which you did not mention in your original post and it is significant. Once one gets to the point where they have aortic stenosis and they are passing out, it is time for surgery and not delay. Had you gone in to get things checked out when this first happened to you last December, your cardiologist likely would have sent you for surgery right away, because the mortality rate once a person has severe AS and symptoms is very high, especially if the symptom is fainting, also known as syncope. The survival curve literally drops off a cliff once the patient gets to this point and does not get surgery. The good news, so far you have been one of the lucky ones and very glad that you are still with us. Please see graph below and note the average survival once a person has severe AS with syncope.



View attachment 889534

It is not just the risk of dying, if you wait too long after the onset of serious symptoms, your heart may not fully remodel, which could lead to serious complications as you age, if not immediately. Hopefully at this point you understand that when you first fainted 8 months ago that you should have taken it seriously and not waited for another fainting episode. Luckily, you are young. The heart of a person who is young tends to do very well at remodeling after surgery and going back to mostly normal. So, this time you may get a free pass. But, please take a mental note of it and have your echo follow up appointments after surgery to not wait so long next time. In that your surgeon is wanting to give you a tissue valve, if you do go that route, you will have future procedures, maybe in just a few years. Going forward, you want to be like clockwork with those echos and if anything feels off in between echos, get seen right away. You are fortunate that you are not a statistic reflected in the above graph. I would not tempt fate again.

Also, in my post above I suggested that you get a second opinion. Now that you have made us aware that you have had multiple fainting episodes, I believe this should be taken into consideration. If you can get a second opinion this week or next, great. But, if you need to wait 2 or 3 months for a second opinion, in my view it is more important to move forward with your surgery than to wait that long. Also, it is not the time to spend months deciding on which valve to get. At this point, make your decision and don't look back or second guess your choice, but don't delay.

I don't mean to scare you with the above stats. As long as you don't delay you should do fine, especially given your age. Waiting 10 months after syncope to get surgery is not a good plan for anyone with severe AS, but you get the "I'm young so I got away with it" pass this time around, for which we are all very glad. Just be aware that you have a very serious condition, known as valve disease and will need to take any symptoms very seriously going forward after surgery. Yes, it is a very serious condition, but the good news is that it has a highly successful solution-modern valve surgery. But, it is just really important to understand that getting a good outcome from this highly successful surgery is very dependent on getting surgery on time and not waiting too long.

Good luck in your upcoming procedure and please keep us posted as to your valve choice and recovery. We all look forward to seeing you on the other side.

 

[Chuck C]

About not related symptoms, I feel dizzy sometimes. But the doctors I had seen told me that can be anxiety

That is possible. But, if a patient has severe AS and their doctor dismisses their dizziness and fainting as anxiety without the benefit of an echo, I would question their competency. They knew you had BAV. When you reported dizzines they should have sent you right away for an echo to rule out progression of your AS. If they did not do this, I would suggest that they have a competency issue and for the future I would seek a physician who is more familiar with valve disease.

 

[Jack Julles Jackson]

That is possible. But, if a patient has severe AS and their doctor dismisses their dizziness and fainting as anxiety without the benefit of an echo, I would question their competency. They knew you had BAV. When you reported dizzines they should have sent you right away for an echo to rule out progression of your AS. If they did not do this, I would suggest that they have a competency issue and for the future I would seek a physician who is more familiar with valve disease.

I saw them just after an eco. Like 1 or 2 weeks later. Or are you suggesting I should have done another?

PS: the sitoms began AFTER the eco and the diagnostic. But Im doin all as fast as the healfcare plan permits. I call there everyday asking for some exam liberations that I still need.

 

[Chuck C]

I saw them just after an eco. Like 1 or 2 weeks later. Or are you suggesting I should have done another?

No, I'm not suggesting that you have another echo. From what you have shared, they already know that you are severe AS with syncope symptoms and they also are aware that it is time for surgery. I was commenting on the fact that, from what you had said, it sounded as if they might have previously dismissed your dizziness as being due to anxiety and that for a patient with BAV and AS, there should not be any such dismissal. That is all.

I've also commented on the importance after surgery to get regular echos and to take any signs of dizziness, fainting or chest pains, very seriously. If these events happen in between your regular echos in the future, after surgery, then I would press my doctor to order further testing, typically an echo, to rule at issues with your prosthetic valve. It is very important for BAV patients to get regular echos and watch for symptoms. Even after surgery, it is important for patients with prosthetic valves to get follow up echos and pay attention to symptoms, taking any symptom seriously.

 

[erricojj]

Hi Jack,
Welcome to the community. You've already gotten invaluable advice from our colleagues.

I can only add my experience with symptoms versus echocardiogram diagnosis. I was 70 yo when I learned my BAV had reached a severe stage based strictly on 3 key metrics...valve opening (1.0 cm2), pressure gradient (>35), and velocity (>4.3) to the best of my recollection. I had no symptoms whatsoever. Ran 2 marathons in my 30s. Work out for 1 1/2 hours 3 times a week.

I never passed out and often double-stepped up staircases without a losing my breath. Would have never known if it weren't for my cardio deciding to monitor me after he heard something through his stethoscope about 2-3 years ago. The echo confirmed it was a BAV. From the date of my echocardiogram showing i was tevhnically severe to the date of my SAVR was 61 days. Also, the echo showed my ascending aortic dilation was 4.2 cm, but the surgeon measured it when he got in there an found it was 4.0, so he didn't replace it...but he did say he "tightened it up a bit".

As a result, I kept away from the "cliff" that Chuck C showed above. I pushed for quick appointments and decision making. I trusted to the data...maybe because I am a chemical engineer and knew what a pump about to fail could mean to the whole process. We tried to repair them before catastrophe struck.

BTW, I have had the Inspiris Resilia since July 2020. Having an annual echo tomorrow...so there's that anticipation...but I do feel very well. Back at the gym, and trying to keep up with the demands of maintaining my house since contractors are hard to find. I did much better getting service for my heart's plumbing than I am finding for house plumbers. Prices are similar though!

Be your own advocate...stay away from the cliff.

BTW, my surgeon recommended tissue valve for my age and circumstance. I asked about Inspiris Resilia and he said he was fine with that. Ultimately it was my decision and I know there's a risk of needing another OHS or a TAVR. I signed up for that risk. However, I think those here who have recommended a mechanical valve for you are giving sound advice.

Best Wishes!

 

[Jack Julles Jackson]

I saw them just after an eco. Like 1 or 2 weeks later. Or are you suggesting I should have done another?

No, I'm not suggesting that you have another echo. From what you have shared, they already know that you are severe AS with syncope symptoms and they also are aware that it is time for surgery. I was commenting on the fact that, from what you had said, it sounded as if they might have previously dismissed your dizziness as being due to anxiety and that for a patient with BAV and AS, there should not be any such dismissal. That is all.

I've also commented on the importance after surgery to get regular echos and to take any signs of dizziness, fainting or chest pains, very seriously. If these events happen in between your regular echos in the future, after surgery, then I would press my doctor to order further testing, typically an echo, to rule at issues with your prosthetic valve. It is very important for BAV patients to get regular echos and watch for symptoms. Even after surgery, it is important for patients with prosthetic valves to get follow up echos and pay attention to symptoms, taking any symptom seriously.

sure, thanks

 

[Jack Julles Jackson]

Hi Jack,
Welcome to the community. You've already gotten invaluable advice from our colleagues.

I can only add my experience with symptoms versus echocardiogram diagnosis. I was 70 yo when I learned my BAV had reached a severe stage based strictly on 3 key metrics...valve opening (1.0 cm2), pressure gradient (>35), and velocity (>4.3) to the best of my recollection. I had no symptoms whatsoever. Ran 2 marathons in my 30s. Work out for 1 1/2 hours 3 times a week.

I never passed out and often double-stepped up staircases without a losing my breath. Would have never known if it weren't for my cardio deciding to monitor me after he heard something through his stethoscope about 2-3 years ago. The echo confirmed it was a BAV. From the date of my echocardiogram showing i was tevhnically severe to the date of my SAVR was 61 days. Also, the echo showed my ascending aortic dilation was 4.2 cm, but the surgeon measured it when he got in there an found it was 4.0, so he didn't replace it...but he did say he "tightened it up a bit".

As a result, I kept away from the "cliff" that Chuck C showed above. I pushed for quick appointments and decision making. I trusted to the data...maybe because I am a chemical engineer and knew what a pump about to fail could mean to the whole process. We tried to repair them before catastrophe struck.

BTW, I have had the Inspiris Resilia since July 2020. Having an annual echo tomorrow...so there's that anticipation...but I do feel very well. Back at the gym, and trying to keep up with the demands of maintaining my house since contractors are hard to find. I did much better getting service for my heart's plumbing than I am finding for house plumbers. Prices are similar though!

Be your own advocate...stay away from the cliff.

BTW, my surgeon recommended tissue valve for my age and circumstance. I asked about Inspiris Resilia and he said he was fine with that. Ultimately it was my decision and I know there's a risk of needing another OHS or a TAVR. I signed up for that risk. However, I think those here who have recommended a mechanical valve for you are giving sound advice.

Best Wishes!

Thanks for sharing your story. My cardiologist and my surgeon sayd my aorta is good and im going to have an tomography of the hart before the surgery to see if everything else is fine.

 

[Jack Julles Jackson]

News.
Got a second opinion. I get to this old cardiologist who took a look on my eco and he sayd its "wrong" someway. I have 0,7cm2 of opening area and a velocity of 4,4 and he says my heart is "too fine" to have a so several stenosys. He give me documents to get antother eco and I did in the same day...

... But it was a false hope. The diagnostic of stenosis still there. But, now he that we have two ecos, he also agrees I need to get a biological valve. I dont know if I can trust him, but Im seeng as much doctors as my health care permits.

Until now the game is bio 2 x 1 mecanic.

Thank you all for the support. And sorry for the bad english.

 

[Superman]

Guessing your English is far better than any of our Portuguese. Thanks for updating.

 

[Jack Julles Jackson]

Guessing your English is far better than any of our Portuguese. Thanks for updating.

Thanks, bro.

 

[pellicle]

he also agrees I need to get a biological valve. I dont know if I can trust him, but Im seeng as much doctors as my health care permits.

so he agrees ... what does this even mean?

He agrees that

• its better you have multiple surgeries
• you can't be trusted with managing INR
• that the statistics show that people don't therefore you wont

what's the basis for the decision??

I regularly tell people "you shouldn't ride a motorcycle because its dangerous", yet:



and an electric scooter


why do I not do as I say? Because I trust myself more than I trust some ones 17yo who I know is a typical teenager.

 

[Jack Julles Jackson]

so he agrees ... what does this even mean?

He agrees that

• its better you have multiple surgeries
• you can't be trusted with managing INR
• that the statistics show that people don't therefore you wont

what's the basis for the decision??

I regularly tell people "you shouldn't ride a motorcycle because its dangerous", yet:



and an electric scooter


why do I not do as I say? Because I trust myself more than I trust some ones 17yo who I know is a typical teenager.

One argument was the duration of the new bio valves and needing of any cirurgical procedures Iif on INR. He sayid he got an patient with 18y old bio valve, but I forgot to ask the age.

My endocrinologyst says there's no problem on having diabetes and doing INR

 

[pellicle]

he also agrees I need to get a biological valve

I'd suggest reading this post (sorry I can't recall your age, its not in your bio (the about) and I'm too lazy to fish)

https://www.valvereplacement.org/threads/hoping-3rd-time-is-the-charm.889232/post-926709

 

[pellicle]

and needing of any cirurgical procedures Iif on INR

oh, that old, misinformed and largely out of date information.

https://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
https://cjeastwd.blogspot.com/2020/10/another-example-small-procedure.html
https://cjeastwd.blogspot.com/2022/05/rapid-dust-off-inr-management.html
the guy is only out of touch by 10 or so years and afraid of actually doing anything.

 

[pellicle]

I wonder what "informed choice" means

1. the cardiologist / surgeon told me some stuff and then said get A
2. the patient finds actual current factual data and evidence then makes a choice between A or B based on their understanding of the information

 

[pellicle]

I like this phrasing
https://www.valvereplacement.org/threads/inr-how-low-should-you-go.889228/page-2#post-926694

People know that the Hippocratic Oath sates, “Above all, do no harm.” It takes a lot of life lessons to realize that it doesn’t say, “Always do what’s in the best interest of your patient"

and how can they know what your personal interests are?

 

[Jack Julles Jackson]

Thank you for sharing this with me. This is a very difficult decision.

 

[pellicle]

This is a very difficult decision.

to me its simple:

1. if you are under 50
2. if you have no specific conditions (everything is a conjecture)

then mechanical

over 65 then tissue

middle ground is a bit of a grey zone

Did you watch the Dr Schaff presentation?

 

[Jack Julles Jackson]

Did you watch the Dr Schaff presentation?

I think I lost it. Where is it?
I have another question. My heart is tottaly fine, it have the right size and works fine in all aspects, besides the valve. That is what makes the second cardiologist I saw curious. Its commmon? Cant find anything about it on internet.
He made me do another eco because of it. It sayid the first one may be wrong. He let me intrigued.