I have mild aortic stenosis since I was born

[Paul_R]

Hi all,

I was diagnosed with mild aortic stenosis when I was born, with a bicuspid valve. I had never had any difficulties at all. I am now 34 years old and it is still mild.

I get yearly checkups. My cardiologist told me that in 1994 it was 32% blocked on opening, and now it is about 33%-34% blocked, so more or less the same.

My query is, is it actually possible for the condition to stay mild all my life? It would put my mind at ease. I get really depressed when I think about how it would progress and need open heart surgery.

I'd like to hear from people with the same condition and experiences.

Thanks,
Paul

 

[Paleowoman]

Hi Paul - I don’t think there is any way anyone can forecast how the stenosis of bicuspid aortic valve will progress or if it will stay stable the whole of a person’s life. I’m older than you, I’m now 64, so I do wonder if my bicuspid valve would have been discovered earlier if I had been born more recently with advances in medical care. The murmur of my bicuspid aortic valve was not heard until I was 25 and a doctor was just listening to my chest when I had a case of simple bronchitis - if I’d never had a doctor listen to my chest how long would it have been till the BAV would have been discovered ? Anyway, when my BAV was discovered nothing was done. When I was 35 and pregnant I had an echo and then nothing again. Fast forward until I was 53 and a gastroenterologist thought I should see a cardiologist again. Cardiologist said the stenosis was mild but I had annual echos from then on - the stenosis rapidly progressed during my late 50’s and I had surgery to replace the valve when I was 60. I never had any symptoms at all. I was very fit until I had surgery, even the day before surgery I had a six mile walk and lifted weights.

I know it must be very stressful for you to have yearly checkups, reminding you always of this, but in some ways it’s good that you are being monitored in case your stenosis does progress - as I said I never had any symptoms so goodness knows what might have happened if I had not been monitored.

Do keep yourself healthy, for the sake of your heart and overall health !

 

[Paul_R]

Hi Paul - I don’t think there is any way anyone can forecast how the stenosis of bicuspid aortic valve will progress or if it will stay stable the whole of a person’s life. I’m older than you, I’m now 64, so I do wonder if my bicuspid valve would have been discovered earlier if I had been born more recently with advances in medical care. The murmur of my bicuspid aortic valve was not heard until I was 25 and a doctor was just listening to my chest when I had a case of simple bronchitis - if I’d never had a doctor listen to my chest how long would it have been till the BAV would have been discovered ? Anyway, when my BAV was discovered nothing was done. When I was 35 and pregnant I had an echo and then nothing again. Fast forward until I was 53 and a gastroenterologist thought I should see a cardiologist again. Cardiologist said the stenosis was mild but I had annual echos from then on - the stenosis rapidly progressed during my late 50’s and I had surgery to replace the valve when I was 60. I never had any symptoms at all. I was very fit until I had surgery, even the day before surgery I had a six mile walk and lifted weights.

I know it must be very stressful for you to have yearly checkups, reminding you always of this, but in some ways it’s good that you are being monitored in case your stenosis does progress - as I said I never had any symptoms so goodness knows what might have happened if I had not been monitored.

Do keep yourself healthy, for the sake of your heart and overall health !

Hi, and thanks for that.

I am getting checkups every 6 months actually, ECG every 6 months and once a year just for echoes. It is stressful as the worry is always there before the checkup with "let's hope it hasn't progressed ". A part of me tells me it would be better if I didn't know about it and I would enjoy life more.

The fact that it hasn't progressed in 34 years since I was born, makes me wonder could there be a chance that it stays stable all life. I have never heard about a case where it stayed stable with someone tho, so not sure if it's even possible

Like yourself, I never have/had symptoms. I am fit and feel great. I run alot ,5 days a week and I can't believe that I have a heart issue.

How do you feel now after the valve replacement. Was it long ago?

 

[Paleowoman]

Hi Paul,

I have heard of people that lived all their lives with bicuspid aortic valve and never needed surgery, in fact they've discovered people had it on autopsy who lived long lives. I'm not sure of the number of people with it that eventually need surgery, it's certainly not everyone.

I had my valve replacement three and half years ago. I think I would have liked to have had some symptoms prior to surgery as I sometimes do doubt I realy needed it when I was referred for it. Actually I am having echos and ECGs every six months now. It appears I should have had a root enlargment to give me a bigger valve than I got so that is why the frequent echos and ECGs as the pressure gradient is rising - so I really do appreciate how you feel about having tests so often, but I also feel that at least I am being well monitored. I still keep fit as I know that keeping fit and healthy is helpful overall.

I wonder if you coud ask for your echo and ECG to be done at the same time or thereabouts ? Then at least you'd have a 12 month gap inbetween to forget about it for a while ?

 

[epstns]

Hi, Paul,

I had aortic stenosis that was not diagnosed until I was in my early 50's. I finally had my valve replaced when in my early 60's. From my research back about 15 years or so, IIRC the stats were that about 2% of the population has bicuspid aortic valves, but less than 25% of those patients actually progress to the point at which they need valve replacement. The exact statistics may be wrong, but I am sure the gist of things is correct. Bicuspid valves are fairly common among the population, but only a minor fraction of them ever need surgery.

I obviously had my bicuspid valve from birth, and it didn't become bad enough for surgery until my 60's. In your shoes, I would train myself to stop worrying. Just keep up with the check-ups and get on with living the life you want to live. Even if your valve does begin to deteriorate, these things almost always progress very gradually. Yes, we do say "The worse it gets, the faster it gets worse" but remember, many of us don't even know we have bicuspid valves until later middle-age, and we do fine. You may need surgery some day, and you may not. There is nothing you can do to change that, so why not live life to its fullest and deal with it only if you have to? (Or, as I tell my adult daughter, "There's nothing wrong until there's something wrong.")

 

[Paul_R]

Hi, Paul,

I had aortic stenosis that was not diagnosed until I was in my early 50's. I finally had my valve replaced when in my early 60's. From my research back about 15 years or so, IIRC the stats were that about 2% of the population has bicuspid aortic valves, but less than 25% of those patients actually progress to the point at which they need valve replacement. The exact statistics may be wrong, but I am sure the gist of things is correct. Bicuspid valves are fairly common among the population, but only a minor fraction of them ever need surgery.

I obviously had my bicuspid valve from birth, and it didn't become bad enough for surgery until my 60's. In your shoes, I would train myself to stop worrying. Just keep up with the check-ups and get on with living the life you want to live. Even if your valve does begin to deteriorate, these things almost always progress very gradually. Yes, we do say "The worse it gets, the faster it gets worse" but remember, many of us don't even know we have bicuspid valves until later middle-age, and we do fine. You may need surgery some day, and you may not. There is nothing you can do to change that, so why not live life to its fullest and deal with it only if you have to? (Or, as I tell my adult daughter, "There's nothing wrong until there's something wrong.")

Thank you. You are right . I should stop worrying. There are many worse things to have.

My cardiologist is a bit pessimistic however. Every time I go there, he says It's still mild and not that bad yet, and I don't have symptoms yet. The word "yet" I hate. When I hint to him that maybe it will not progress, he never agrees.

Many people have a bicuspid aortic valve, but does that mean they have aortic valve stenosis aswell?

 

[Zoltania]

Hi Paul,

"Stop worrying" is good advice, though easier said than done. It's also helpful to do what you're doing by being here, namely educating yourself. Then if it ever does come to the point where you need surgery, you will know a lot more about what to expect and how people have coped with similar experiences. I found the post-surgery forum where people shared their stories to be particularly useful, and I posted my own when the time came.

 

[pellicle]

Hi

... I should stop worrying. There are many worse things to have.

correct ... such as cancer, liver failure, diabetes, a life on dialysis .... all with far far worse prognosis and treatments.

OHS is about the most successful intervention in the medical repertoire. Even if you need surgery (read here how many testimonials there are to this) you will have a short stint in hospital, a short recovery (often less than 16 weeks) and then go on to live a far more normal life.

My cardiologist is a bit pessimistic however. Every time I go there, he says It's still mild and not that bad yet, and I don't have symptoms yet. The word "yet" I hate. When I hint to him that maybe it will not progress, he never agrees.

two things:
1) yet is the correct word. You aren't dead YET, you haven't been killed in a car accident YET, you may not have paid taxes YET ... yet is just a word ... it is not until there is no more opportunity for the event (such as you die) that yet can change to EVER.

2) he's not pessimistic, he's realistic ... he may not agree that it won't progress, but he may agree that it may not progress to require surgery in your lifetime. Even if it does so what? I've had 3 and I'm still living an active life.

Many people have a bicuspid aortic valve, but does that mean they have aortic valve stenosis aswell?

stenosis is a medical word : "The abnormal narrowing of a passage in the body"

you already have stenosis ... if you have BAV then you are born with stenosis. What matters is not that you do or do not have a word, what matters is if your condition moves to a stage where its a threat to you.

Read up on risk analysis, for this is exactly what all surgeons (and before them cardios) do ... analysis of the risk of surgery VS the risk of leaving it as it is.

They take measurements freqyently (and compare to history to understand progress) to determine your risk levels.

Stop worrying ... people say its easier said than done, but that means they are deluded. You can not control many things in life, but you can (if you wish) control your own mind. Do you worry frequently about being hit at an intersection? Do you text while walking?

Life is for living, death will come for us all in time my friend, so don't burden yourself with worry when there is so much else to enjoy before then.

Something I wrote a while back:
http://cjeastwd.blogspot.com/2015/09...-delusion.html

Best Wishes

 

[Paul_R]

Hi


correct ... such as cancer, liver failure, diabetes, a life on dialysis .... all with far far worse prognosis and treatments.

OHS is about the most successful intervention in the medical repertoire. Even if you need surgery (read here how many testimonials there are to this) you will have a short stint in hospital, a short recovery (often less than 16 weeks) and then go on to live a far more normal life.




two things:
1) yet is the correct word. You aren't dead YET, you haven't been killed in a car accident YET, you may not have paid taxes YET ... yet is just a word ... it is not until there is no more opportunity for the event (such as you die) that yet can change to EVER.

2) he's not pessimistic, he's realistic ... he may not agree that it won't progress, but he may agree that it may not progress to require surgery in your lifetime. Even if it does so what? I've had 3 and I'm still living an active life.



stenosis is a medical word : "The abnormal narrowing of a passage in the body"

you already have stenosis ... if you have BAV then you are born with stenosis. What matters is not that you do or do not have a word, what matters is if your condition moves to a stage where its a threat to you.

Read up on risk analysis, for this is exactly what all surgeons (and before them cardios) do ... analysis of the risk of surgery VS the risk of leaving it as it is.

They take measurements freqyently (and compare to history to understand progress) to determine your risk levels.

Stop worrying ... people say its easier said than done, but that means they are deluded. You can not control many things in life, but you can (if you wish) control your own mind. Do you worry frequently about being hit at an intersection? Do you text while walking?

Life is for living, death will come for us all in time my friend, so don't burden yourself with worry when there is so much else to enjoy before then.

Something I wrote a while back:
http://cjeastwd.blogspot.com/2015/09...-delusion.html

Best Wishes

Thanks. Appreciate that

 

[pellicle]

Thanks. Appreciate that

See if can find a course in meditation. Helps you to learn how to master your mind rather than it master you .
​​​​
Words from a George Michael song:

We've so much to lose
And what we have to learn, we rarely choose


So the​​se things in life can be an opportunity, not just an obstacle.

Best Wishes

 

[MarkU]

My bicuspid valve was first diagnosed as a "murmur" when I was five years old. When I was 15, my doctor thought it would be a good idea to have a cath to check things out; that was when the bicuspid valve diagnosis was confirmed.

I was otherwise healthy and was given no restrictions on my activities. My cardiologist said that it was possible that I would never need surgery, but at the same time, if did ever need surgery to wait as long as I could to allow the surgical technology to advance as far as possible.

The longer I went, the more I assumed (or hoped) that I would be lucky and never need surgery.

I was fine until age 47 when I had a rather rapid onset of symptoms of congestive heart failure: shortness of breath, & chronic fatigue. My symptoms were severe enough to dramatically affect my level of activity and quality of life. My cardiologist told me at that point that I had about a three year life expectancy if I didn't have surgery. No brainer at that point.

Got a St Jude mechanical valve in December 2000. Took about nine months to fully recover from the surgery , but afterwards had no restrictions and felt great for 17 years.

Unfortunately, due to the missing valve, I started to develop an AV block a couple of years ago and ended up with bradycardia and a HR of 28-30. Got a pacemaker this past June. Again, no restrictions and I continue to lead a full and active life (I compete as a Masters swimmer and put in over 500,000 yards of training in the pool annually.).

I guess my point is that sometimes you just have to play the hand you're dealt. I wouldn't have chosen to be born with a bicuspid valve, but it is what it is. One of the worst things for me was seeing the guilt that my parents suffered, like it was somehow their fault.

My valve eIiminated some of my options in life, primarily my desire to serve in the military, but on the whole I've still been able to live a pretty good life.

Good luck to you.

Mark

 

[epstns]

Paul - I see that we didn't answer your question as to whether having a BAV always leads to aortic stenosis. I'm not a doctor, but I would have to answer "yes and no." There may not be a direct medical linkage between BAV and aortic stenosis, at least I have not read of any being found, BUT there is a high degree of correlation between having a BAV and developing aortic stenosis earlier than usual. The typical non-BAV aortic stenosis patient is in their 70's or 80's. Many BAV patients are diagnosed with their aortic stenosis while still in their 50's or earlier. Does the BAV cause stenosis? They aren't sure, but it sure seems to be there when younger patients develop aortic stenosis.

 

[cortezteacher]

Hi Paul,
When I read your post I thought I was reading my own story. I was in the same situation as you are now when I was 34. Today I’m 50 and next Monday, August 21, 2017, I am going to see my surgeon to pick the date for my open heart surgery. He said it will be in early September. I did whatever I wanted to when I was growing up. I live my life like I do not have a heart problem. I race motocross, snow ski, snowboard, snowmobile, road bike, mountain bike, water ski and wakeboard. The only sport my cardiologist would not let me play was football. However, I did play in an alumni game a few years ago, I guess I just wanted to be able to say I got to do everything I every wanted, even with a “bad” heart. My goal was to not think about heart surgery until the doctor said I would need it. The yearly checkups would remind me, but after I left the doctors office, it was back to enjoying life. At my last checkup the doctor said it’s getting worse we got to get surgery scheduled soon. So I got a second opinion, because I didn’t want it to be true, ( I suggest getting a second opinion) and the surgeon told me to do it before October. So the time has come. I never had any symptoms and I still don’t. It is crazy thinking I will be getting OHS and I don’t feel any different. I actually think I’m in better physical shape now than when I was 34. Now my family and I are researching every valve and procedure to make sure I put myself in the best position to continue my life just as I have in the past, if not better. I would also like to add the I have an awesome wife and the two best daughters anyone could ask for. Good luck with everything. And live life to the fullest!

 

[mikeccolella]

I had rheumatic fever at three that left my aortic valve damaged. At your age mine was still considered mild. Att he age of 48 it was diagnosed as moderate. For 18 years it stayed moderate and then it became severe. I had symptoms, mild at first, and then it went downhill fast. I had surgery in February of this year. I am 6 months post op and feel fine. I would strongly advise you to eat a very heart healthy diet, exercise moderately and dont smoke. Your may last a very long time, and with any luck for the rest of your life. Good luck