Diagnosed with moderate-severe aortic stenosis 2 days ago....

[KarenK]

Hi everyone, I'm rather overwhelmed with this and what I should or shouldn't be doing at this time. Is exercise good or potentially harmful?
Haven't seen a cardiologist yet, waiting on the referral. I hear they cardiologist are really busy in this area
so I'm wondering how serious they will take this or will I have to wait months to see one. I'm wondering if I should travel
out of the area to see a cardiologist or just be patient.

 

[pellicle]

Hi and Welcome

basically you need to keep doing moderate exerisze. Don't drive yourself to the brink, just keep your HR up and act "normally" (*unless normally is training for some competitive sport). Usually if someone has a big red light go off on their dash and something is life threatening then its pushed through quickly as a priority. If it hasn't then chances are its not.

What's your resting HR? What can you get your HR up to? How was this even found?

I checked your bio and you say "possible animal valve" ... so just to clear up those valves are commonly called bioprosthetic valves, depending on your age that can be a good option or a bad one. There is pretty much nothing left of them being animal just like the leather in your wallet or shoes. They aren't living tissue at all. I'd suggest adding useful data as it comes to hand into your bio so that anyone who answers can look there before making assumptions.

There are various options from carbon valves (like the St Jude or the On-X) as well and even other more elaborate surgical options (none of which is a perfect solution).

Everything is a compromise, and its best to use this time in the waiting room to sit back, relax and inform yourself about what is what and what the advantages and disadvantages are.


Best Wishes

 

[KarenK]

Lol, a merkinologist! I haven't heard anybody use the word merkin in years!

You've become an expert (the hard way) on valve issues. You must be such a help to many on this forum.

One day I suddenly had a couple waves of chest pain that had me running for the bathroom and losing my lunch. It was a brief but I mentioned it to the doc on my next visit so he decided to check me out back in July! It took him until now to communicate that there's a problem! In the mean time I had orthopedic surgery which I shouldn't have had.

I was having a "moment" and couldn't recall the word bioprosthetic. For me, there is no decision to make. It's gotta be a bioprosthetic one as I can not take nsaids or any type of blood thinning meds. I've had a craniotomy for a leaking brain aneurysm. After the surgery, the neurosurgeon gave me an image showing me where there was a possible start of another aneurysm. The metal in my head messes up any imaging so I have no idea how it's doing so absolutely no mechanics valves.

My heart rate is usually 75-80. I won't be doing anything strenuous as my feet are messed up, and only had surgery one and I suppose I'll be waiting quite a while for the second foot. Getting old and falling apart, sucks! I'm 67 by the way.

Stay healthy

 

[pellicle]

Hi

Lol, a merkinologist! I haven't heard anybody use the word merkin in years!

lol indeed ... and congratulations you are the first one to pick up on that ;-)

You've become an expert (the hard way) on valve issues. You must be such a help to many on this forum.

I believe that opinion is divided on that ;-)

One day I suddenly had a couple waves of chest pain that had me running for the bathroom and losing my lunch.

right ... well not that I'm advocating this, but I've sat beside (in waiting rooms) many a patient who (at about your age) was finally diagnosed. Now while one wouldn't want to go on doing nothing I'd say that if you just tone down a little what you've previously been doing that you'll probably be fine for some more months while the medical people "sort their 5hit out" (as it were).

...In the mean time I had orthopedic surgery which I shouldn't have had.

suggesting that your activity levels are all commensurate with your capacity. I'm not suggesting to defer anything, but just trying to ease your soul on the urgency.

...For me, there is no decision to make. It's gotta be a bioprosthetic one as I can not take nsaids or any type of blood thinning meds.

I would entirely agree given your age ... and even more so this next bit of data

I've had a craniotomy for a leaking brain aneurysm.

The metal in my head messes up any imaging so I have no idea how it's doing so absolutely no mechanics valves.

while there'd be no argument from me on that point its important to mention that a modern mechanical valve isn't metallic and indeed is a carbon based ceramic.

https://en.wikipedia.org/wiki/Pyrolytic_carbon
My heart rate is usually 75-80.

excellent ... quite reasonable for your age

I won't be doing anything strenuous as my feet are messed up, and only had surgery one and I suppose I'll be waiting quite a while for the second foot.

also good (not the condition, but the strenuous bit )

Getting old and falling apart, sucks! I'm 67 by the way.

it most certainly does.

a while back an older gentlman (I'm not quite 60 yet) said to me in the supermarket "what's good about getting old?"

I said, I dunno ... what?

he replied emphatically "Nothing!"

says it all there doesn't it.

Getting back to the valves, for your parameters the Resilia seems to be getting good data. There aren't many studies that look out past 15 years, but I'd say one could reasonably expect 20 in your situation.

unless there's something you're not telling us ...

Best Wishes

 

[Paleowoman]

Hi Karen - welcome to the forum !

You write you have been diagnosed with moderate-severe aortic stenosis but you didn't mention an echocardiogram. Did they tell you the cause of the aortic stenosis ? An echo is usually able to determine that.

I had a biscuspid aortic valve which was first heard when I was 25 but it didn't need to be replaced until I was 60. I had aortic valve replacement nine years ago - I got a bioprosthetic valve, one made from bovine pericardial tissue. The latest bioprosthetic valve is the Insipris Resilia one that Pellicle mentioned, it came out a couple of years after I had my AVR so I missed out on that one.

Before I had my valve replacement I did quite a lot of exercise, both weight lifting and walking - in fact the day before I went in for surgery I had a four mile walk and felt well, so I suppose a lot depends on how you feel.

all the best, Anne

 

[SiestaKeyJimmy]

Hi Karen,

Welcome to the club!

I’m Jim from Florida. I've been hanging around this helpful group since about 2018, when I was told I had moderate aortic stenosis. I was getting echos every two years. Last year I moved into the “moderate to severe” class, and I now get the echocardiograms every 6 months (my next one is in Feb).

I’ve learned a great deal from this group over the years, so I’m sure you will also if you visit daily.

I continue my normal exercise, (which is not very strenuous), I bike ride (or stationary bike) 3-4 times per week. I do not seem to have any symptoms from my “AS” (aortic stenosis), but do notice I am more fatigued than I used to be. (Of course I’m an old guy, so it’s always difficult for me to tell if I’m tired because of AS or only because I’m OLD!)?

Currently I am on a 6 month appointment schedule, and everytime I visit my doc, he reminds me that my AS is getting worse, but he hasn’t yet told me now is the time. (Maybe next month?)

To me, the most important decision I may be facing is Surgery or TVAR? As you will discover, many (if not most) of the folks here in this community have had valve replacement with conventional surgery. At my age I assume I will go the TVAR route, (if I qualify), but at your age, this may someday become an important decision for you. Anyway, Welcome!

 

[Croooser]

Seems like more than a few of us have ventured into severe territory with very little in the way of symptoms. And also several to many years before Valve replacement was recommended.

In the USA you should be able to have an echo on order from your PCP before seeing a Cardiologist. The echo results go a long way toward indicating whether your condition is moderate or severe. If you have not already had a recent one, then it might be a good idea.

"It was a brief but I mentioned it to the doc on my next visit so he decided to check me out back in July! It took him until now to communicate that there's a problem!"

IMO, That's not OK when your heart is involved and, especially with that diagnosis. One need not wait an extended period of time to get to see a Cardiologist. You may need to travel to a larger city, but it can be arranged. Now, if your doc waited that long because it's early stage, then he should have explained that to you. This board has plenty of stories about Doctors who had a lack of a sense of urgency and/or a lack of the appropriate expertise. Only you can say whether or not that's an issue for you.

 

[oo0My_Valve0oo]

Hi Karen, I had a murmur detected 7-10 years before anything serious called for attention. The way it was explained it would be monitored but I expected very little change and to live the rest of my life just keeping an eye on the murmur. There was a period of a few years when I switched between med insurances three times and only had cursory exams req for the work I do. Then I saw a personal doc for fatigue and getting out of breath that showed up all of a sudden which did not respond to rest. The PCP sent me for an echo and the tech was rushing to the closest cardiologist as I left. I was directed to a cardiologist within a few days and informed valve replacement was inevitable. I was scheduled but able to delay it a month waiting for new fiscal year. I had a preliminary CT scan 2 weeks prior to surgery expecting to work all the way through the Saturday before surgery on Monday but the doc who reviewed my CT scan told me not to go back to work before the surgery. I didn't discover this forum til post-surgery. I am certain that the collective experience and data available here on this forum is superior to what my circle of medical people offered me. Not that anyone I know of is a heart surgeon or cardiologist but the people here collectively make a thorough presentation, something I have not received anywhere else.

 

[carolinemc]

Hi everyone, I'm rather overwhelmed with this and what I should or shouldn't be doing at this time. Is exercise good or potentially harmful?
Haven't seen a cardiologist yet, waiting on the referral. I hear they cardiologist are really busy in this area
so I'm wondering how serious they will take this or will I have to wait months to see one. I'm wondering if I should travel
out of the area to see a cardiologist or just be patient.

Welcome and yes, they will take your case very seriously. Now on the waiting, depending on how the scheduling is there at the clinic. Good luck getting in and getting a very great cardio. Just be patient and give the cardio a chance.

 

[Chuck C]

Hi Karen and welcome to the forum!

When they first diagnosed mine, I was in the moderate/severe range also. It took about 20 months to become severe for me, but aortic stenosis progresses differently depending on several factors.

I would encourage you to stay active and exercise. I exercised right up until the day before surgery. It is best to go into surgery in good physical condition, than to go in sedentary. Of course, if your doctor tells you not to exercise, listen to him, but it sounds like he has not given you this instruction. It is almost always ok to at least do brisk walking.

he decided to check me out back in July! It took him until now to communicate that there's a problem!

That's a concern. When you say that he checked you out, does that mean that he referred you to getting an echo? If he diagnosed you as moderate/severe AS, I expect he probably did so. At moderate/severe, you should be getting echos every 6 months at least. It is problematic that he waited 6 months to communicate to you that you have AS. While you are waiting for your cardiology appointment, he should order another echo. It has been 6 months and it is time for your next one. You could very well have crossed the line into severe in the past 6 months, but no way to know until they get an echo or an MRI. It would also be good to go into the cardiology appointment with a current echo, instead of one that is 6+ months old.

I hear they cardiologist are really busy in this area
so I'm wondering how serious they will take this or will I have to wait months to see one. I'm wondering if I should travel

If it will take months to see a cardiologist, I would consider travelling to see one sooner.

The good news is that there is a great solution to your problem- valve replacement surgery, which has excellent outcomes.

At 67, I would fully agree that a biological valve is the best choice and given that you have shared that you are contraindicated for warfarin, it is really the only choice. If I was 67, I would probably opt for the Edwards Resilia valve, which has been treated to delay the calcification process. It may very well be the last valve that you need. Also, it is designed to accomodate a future TAVR valve. If you do get to the point of needing another procedure, you will likely be in your mid to late 80s and a TAVR would probably be optimal. But, at 67, I would not yet consider TAVR.

Best of luck and please keep us posted.

 

[KarenK]

Hi Karen - welcome to the forum !

You write you have been diagnosed with moderate-severe aortic stenosis but you didn't mention an echocardiogram. Did they tell you the cause of the aortic stenosis ? An echo is usually able to determine that.

I had a biscuspid aortic valve which was first heard when I was 25 but it didn't need to be replaced until I was 60. I had aortic valve replacement nine years ago - I got a bioprosthetic valve, one made from bovine pericardial tissue. The latest bioprosthetic valve is the Insipris Resilia one that Pellicle mentioned, it came out a couple of years after I had my AVR so I missed out on that one.

Before I had my valve replacement I did quite a lot of exercise, both weight lifting and walking - in fact the day before I went in for surgery I had a four mile walk and felt well, so I suppose a lot depends on how you feel.

all the best, Anne

Hi,
I was told moderate-severe and see a cardiologist. That was all I was told. I had no idea they could tell the cause. Googling AS studies is how I learned anything at all. There's some scary reading out there! As far as behavior modification all I saw was strenuous exercise damaging the heart with AS.
Since my feet are messed up, I just got one of those things that you pedal sitting down. Now that makes me feel old!

How are you doing now? What differences, good or bad, did the new valve make in your life?

I greatly appreciate your input. This is scary business.

 

[KarenK]

Seems like more than a few of us have ventured into severe territory with very little in the way of symptoms. And also several to many years before Valve replacement was recommended.

In the USA you should be able to have an echo on order from your PCP before seeing a Cardiologist. The echo results go a long way toward indicating whether your condition is moderate or severe. If you have not already had a recent one, then it might be a good idea.

"It was a brief but I mentioned it to the doc on my next visit so he decided to check me out back in July! It took him until now to communicate that there's a problem!"

IMO, That's not OK when your heart is involved and, especially with that diagnosis. One need not wait an extended period of time to get to see a Cardiologist. You may need to travel to a larger city, but it can be arranged. Now, if your doc waited that long because it's early stage, then he should have explained that to you. This board has plenty of stories about Doctors who had a lack of a sense of urgency and/or a lack of the appropriate expertise. Only you can say whether or not that's an issue for you.

Hi Croooser!
I've started to think I may have symptoms that I've been attributing to other things. Such as, I started having dizziness 3-4 months ago and I was thinking it was related to the prior brain surgery. Increasing shortness of breath to asthma. Bouts of fatigue to age. A few heart palpations I chose to go ignore. I've had chest pain with vomiting which is what prompted the echo and stress test. At the time the doctor suggest it was a gallbladder issue.

Not being able to see a cardiologist had me so stressed out. The cardiologist I was referred to wouldn't see me for 4 months!! I was able to get my doctor to do a referral to another medical system which they hate to do. I now have a cardiologist appointment on Monday! Such a relief. I was trying to figure out where I'd travel to and running into road blocks. The Chief of Neurosurgery at the Mayo Clinic did my brain surgery so my first thought was to go there... wrong. They only take Medicare from 3 states. Checked into buying insurance... can't past the age of 65.

I've experienced bad behavior by doctors on more than one occasion so I had been getting copies of all imaging and test results myself so that I wouldn't be mislead and could make informed decisions. This one time I forgot to ask, then decided to let it go rather then follow up and the get copies. I won't do that again!

I just hope they have a good heart surgeon here in Arkansas. The University of Arkansas Medical Center in Little Rock is the big medical center in Arkansas. Their Chief of Neurosurgery is damn right scary. They used to have a world class neurosurgeon that they paid approx. $750k a year. They are state employees so you can find out a lot about them. I was referred to his replacement. His salary was in the $250k range and I even got a hold of his curriculum vitea. He kept moving around, the longest he ever stayed at any medical center was 18 months. I found this out after I met with him and caught him in a serious lie. I guess most people don't do the kind of research that I did. So it was on to the Mayo Clinic.

Where are you located? When did you have your surgery?

 

[KarenK]

Hi Karen,

Welcome to the club!

I’m Jim from Florida. I've been hanging around this helpful group since about 2018, when I was told I had moderate aortic stenosis. I was getting echos every two years. Last year I moved into the “moderate to severe” class, and I now get the echocardiograms every 6 months (my next one is in Feb).

I’ve learned a great deal from this group over the years, so I’m sure you will also if you visit daily.

I continue my normal exercise, (which is not very strenuous), I bike ride (or stationary bike) 3-4 times per week. I do not seem to have any symptoms from my “AS” (aortic stenosis), but do notice I am more fatigued than I used to be. (Of course I’m an old guy, so it’s always difficult for me to tell if I’m tired because of AS or only because I’m OLD!)?

Currently I am on a 6 month appointment schedule, and everytime I visit my doc, he reminds me that my AS is getting worse, but he hasn’t yet told me now is the time. (Maybe next month?)

To me, the most important decision I may be facing is Surgery or TVAR? As you will discover, many (if not most) of the folks here in this community have had valve replacement with conventional surgery. At my age I assume I will go the TVAR route, (if I qualify), but at your age, this may someday become an important decision for you. Anyway, Welcome!

Hi Jim,
Sorry, I'm delayed in responding to everyone. I've been too stressed out about getting to see a cardiologist and learning about this by Googling studies and articles and stressing myself out even more! Forums like this are lifesavers, extremely helpful.

I go through periods of fatigue, from just a couple days, to a week at a time where I'm wondering what's wrong with me, and questioning if this is just age.
This fatigue even though I take adderall, a stimulate (due to a series of TIAs from another surgery). I've really got to step up (start) my exercise routine. It's more important than ever now.

Are you in the states? I've seen where Medicare covers TARV, but haven't seen any information on if the cover AVR. I haven't started looking into the surgery or valves yet.

 

[KarenK]

Hi Karen, I had a murmur detected 7-10 years before anything serious called for attention. The way it was explained it would be monitored but I expected very little change and to live the rest of my life just keeping an eye on the murmur. There was a period of a few years when I switched between med insurances three times and only had cursory exams req for the work I do. Then I saw a personal doc for fatigue and getting out of breath that showed up all of a sudden which did not respond to rest. The PCP sent me for an echo and the tech was rushing to the closest cardiologist as I left. I was directed to a cardiologist within a few days and informed valve replacement was inevitable. I was scheduled but able to delay it a month waiting for new fiscal year. I had a preliminary CT scan 2 weeks prior to surgery expecting to work all the way through the Saturday before surgery on Monday but the doc who reviewed my CT scan told me not to go back to work before the surgery. I didn't discover this forum til post-surgery. I am certain that the collective experience and data available here on this forum is superior to what my circle of medical people offered me. Not that anyone I know of is a heart surgeon or cardiologist but the people here collectively make a thorough presentation, something I have not received anywhere else.

Hi there,
Oh my! Your experience of being rushed through all this without time to digest it all would have had me just dazed and freaked! People in the medical profession, with their time demands, etc., seem callus at times and often communicate only the bare minimum. The internet and these forums are a God send.

 

[dick0236]

Are you in the states? I've seen where Medicare covers TARV, but haven't seen any information on if the cover AVR. I haven't started looking into the surgery or valves yet.

Yes, Medicare does cover both TAVR and AVR.

 

[KarenK]

Hi Karen and welcome to the forum!

When they first diagnosed mine, I was in the moderate/severe range also. It took about 20 months to become severe for me, but aortic stenosis progresses differently depending on several factors.

I would encourage you to stay active and exercise. I exercised right up until the day before surgery. It is best to go into surgery in good physical condition, than to go in sedentary. Of course, if your doctor tells you not to exercise, listen to him, but it sounds like he has not given you this instruction. It is almost always ok to at least do brisk walking.


That's a concern. When you say that he checked you out, does that mean that he referred you to getting an echo? If he diagnosed you as moderate/severe AS, I expect he probably did so. At moderate/severe, you should be getting echos every 6 months at least. It is problematic that he waited 6 months to communicate to you that you have AS. While you are waiting for your cardiology appointment, he should order another echo. It has been 6 months and it is time for your next one. You could very well have crossed the line into severe in the past 6 months, but no way to know until they get an echo or an MRI. It would also be good to go into the cardiology appointment with a current echo, instead of one that is 6+ months old.


If it will take months to see a cardiologist, I would consider travelling to see one sooner.

The good news is that there is a great solution to your problem- valve replacement surgery, which has excellent outcomes.

At 67, I would fully agree that a biological valve is the best choice and given that you have shared that you are contraindicated for warfarin, it is really the only choice. If I was 67, I would probably opt for the Edwards Resilia valve, which has been treated to delay the calcification process. It may very well be the last valve that you need. Also, it is designed to accomodate a future TAVR valve. If you do get to the point of needing another procedure, you will likely be in your mid to late 80s and a TAVR would probably be optimal. But, at 67, I would not yet consider TAVR.

Best of luck and please keep us posted.

Hi Chuck
Thank you for taking the time to respond. I appreciate everyone's responses so much. It makes a world of difference in navigating this serious health issue.
Your point of going into surgery in good physical condition vs. sedentary is an excellent one for all to hear. One that I will definitely put my best efforts into doing.

The Internist did send me for an echo after I had a brief episode that consisted of waves of chest pain and losing my lunch. Due to prior communication issues with doctors, for the past 10 years I've gotten copies of all imaging and test results. This time I had forgotten to ask for the results with the echo and stress test and I let it go. I won't do that again.

I've got it worked out and I have a Cardiologist appointment Monday morning! It's such a relief, I was so stressed about it. I may not feel that way after the appointment.

I haven't even had a chance to think about the actual surgery or valves yet. You make some very important points that are musts in considering which valve is used. I will definitely check out the Edwards Resilia valve.

"If you do get to the point of needing another procedure, you will likely be in your mid to late 80's..."
That was a reassuring statement for me. My parents lived to their mid and late 80's and I expected I would too, but after reading some of the studies I began to think I'd only make it to around 75 at best.

Thanks again!

 

[Croooser]

I live in FL. Plenty of good heath care here - lots of seniors.

But I decided that, in my opinion, Cleveland Clinic in Cleveland was best for me. See my original thread for details.

Cleveland Clinic accepted my Humana Medicare Advantage. Total out of pocket was maybe $2-3K without travel.

Inspiris Resilia - so far, so good. But who knows?

HTH

 

[Chuck C]

I've got it worked out and I have a Cardiologist appointment Monday morning!

That's great to hear! Much better than waiting months.

 

[Paleowoman]

Hi,
I was told moderate-severe and see a cardiologist. That was all I was told. I had no idea they could tell the cause. Googling AS studies is how I learned anything at all. There's some scary reading out there! As far as behavior modification all I saw was strenuous exercise damaging the heart with AS.
Since my feet are messed up, I just got one of those things that you pedal sitting down. Now that makes me feel old!

How are you doing now? What differences, good or bad, did the new valve make in your life?

I greatly appreciate your input. This is scary business.

Hi Karen - very glad to read you're seeing a cardiologist on Monday.

I'm doing okay thanks. I see my cardiologist annually and have an echocardiogram annually too. I have high pressure gradients across the replacement valve, I don't mean high blood pressure but the actual pressure as the heart pumps blood through the replacement aortic valve - technically it is in the high moderate range as in aortic stenosis but that is technically only, difficult to explain, but it doesn't affect my heart which is the important thing.

Let us know how you get on with the cardiologist when you have time !