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Avatar universal

Aortic valve regurgitation - what now ?

I'm a 41 year old male, 5'10", 185 pounds (or 85 kg, 178 cm in metric), quite physically active (muscle training and aerobic activities 4 days a week, 1 to 2 hours per session). I've been diagnosed with AVR since the first time I had an echochardiogram when I was 29. It's been stable (and considered mild) until July last year, when it was deemed moderate. I had so far no symptoms at all, but since last month I started feeling a bit of chest discomfort. Last week symptoms worsened, so now I have (though not all the time):

- numbness or tingling in extremities (mostly right hand, but today I felt it at my feet after sleeping a lot)
- palpitation (I can feel my heart beating if I lie on my left side). I don't know if I felt this before but I read it correlates to a worsening of AVR
- mild shortness of breath (it feels like a stuffy nose when it actually isn't)
- ocasional neck / upper back / left or right arm pain
- chest pain (sometimes worse at the left side, sometimes worse at the right side)

Ever since the pain started I've been measuring my heart rate and blood pressure, and they're pretty normal. Actually my resting heart rate is very low (around 50, sometimes less), while the blood pressure only very occasionally has been close to 130, being mostly around 115 / 65.

Since I was becoming very anxious about it I went to the ER yesterday. I had an ECG, blood test and chest x-ray, and all of them were fine. Heart rate was good but blood pressure was a little high. The doctor said I should follow up with my cardiologist, so I have an appointment with him in a week from now. Since it's still a week away, I'd like to hear some additional opinions about my case. My main concerns are:

- is it "normal" that AVR worsens this fast or at an "early" age ?
- could it be that my good physical condition actually worsened the regurgitation? I've read in a study ("Recommendations for the management of individuals with acquired valvular heart diseases who are involved in leisure-time physical activities or competitive sports") that bradycardia actually might worsen AVR, and that has made me afraid that I've been doing it all wrong...
- since I don't seem to have arrhythmia, dizziness or high blood pressure, could it be that are alternate treatments to valve replacement?
- will the type of treatment have an effect on my ability to perform endurance sports afterwards ?

I must say that cycling and running are a big part of my lifestyle, and I am scared to death at the idea that I might have to give up these activities. On the other hand, nobody craves to have an open heart surgery, specially considering that replacement heart valves don't last so long ... therefore, I'll be happy to hear any opinions or stories about coping with this issue.

Thanks a lot,
Marc
11 Responses
11548417 tn?1506080564
I think there is no reason to blame yourself for doing something wrong.
When there is no severe leakage, cardiologists encourage patients to keep in good physical shape as this is beneficial for your whole body, including your heart.
That is just what you did. Apart from your AVR you seem to be in great shape. I think there is also no reason to worry about your resting hr. 50 is not abnormal for a physical very active person.

Although not "normal", the aortic valve can wear out prematurely. This is especially the case when it is bicuspid (a congenital condition where the valve has only 2 leaflets).

You will have to wait for the outcome of the echo now to see it leakage has increased.
I can image that you do not like the thought of surgery, but if, at some point it becomes necessary, mechanical valves do last a lifetime.

Good luck and let us know what your cardiologist said.
Avatar universal
Did they mention the cause of the aortic regurgitation?   Typically bicuspid valve, sclerosis, gross abnormalities of the aoritc valve or aortic root dilation-- previous endocarditis?
Avatar universal
Hi mark,

there's been some confusion about it. I always thought it was congenital, but last time I was told it could be due to rheumatic fever as I was a child. Since I remember having a sore throat every other month, it could as well be true. Still, I don't quite understand how the disease progresses in this case.

Anyway, thanks you all for the feedback!
Avatar universal
Damage to the aortic cusps typically-- does the echo show a normal valve?   Good excursion?
Avatar universal
For someone with congenital aortic valve disease, it is pretty typical for symptoms to develop (or to get clinically significant, if trivial symptoms were present previously) when the person is in his or her 40's.  Obviously, I couldn't speculate as to whether your valve disease is congenital or acquired, but the history you give is consistent with congenital aortic valve disease.  

Staying aerobically fit does not make a regurgitant aortic valve get worse.  If, in fact, you do have congenital aortic valve disease, it is due to a tissue defect at the cellular level.  The deterioration of the valve progresses at a rate -- sometimes fast, sometimes slow -- that is independent of lifestyle.  It's good to stay in shape.  If the valve damage is due to rheumatic fever, I don't know anything about that, sorry.

Depending on your individual situation, it might be recommended to restrict heavy weight-lifting, so you might ask your cardiologist about that.  If you had aortic stenosis, rather than regurgitation, you might be advised to restrict any kind of very strenuous exercise, but from your comments, you evidently do not have stenosis.  Aside from those exceptions, it's good for people with aortic valve disease to stay fit, just like it is for everyone else.  It sounds like maybe you need to get clarification from your cardiologist about what kind of exercise is allowed in your circumstances.

I had my AV replaced when I was 47, due to bicuspid disease.  I had regurgitation only, no stenosis, plus I had an aneurysm of the aortic root and ascending aorta.  I was never advised to restrict aerobic exercise, but I was told not to lift anything heavy enough that I had to strain to lift it.
Avatar universal
markmsn10,

I'm doing the echo next week (hopefully), as I'll finally meet my cardiologist on Monday. Last time I checked (in July) I had a moderate regurgitation. I was upset enough that it was for the first time considered "moderate" instead of "mild", but since I had no symptoms I ended up forgetting about it.

skydnsr,

I don't think I have a bicuspid valve, I can't find my last exam but the one I had in 2013 says only that my aortic valve was "slightly thickened", but that the opening was preserved. I know that the measure from my left ventricle went from 50 to 58 mm between 2013 and 2014, and that was the reason the doctor said my insufficiency evolved from "discrete" to "moderate". Still, as I said before symptoms started only now, about 3 weeks ago.

Perhaps I should be patient and wait for the echo but, considering my background, I don't see any other condition that would match my symptoms: chest and arm pain, tingling and/or numbness at fingers and feet and an occasional (and very slight so far) breathlessness. But let's see what the exams say.

May I ask you what type of replacement valve have you chosen ?

Thank you all very much,
Marc
Avatar universal
I also have mild-to-moderate aortic insufficiency, with frayed valve edges or perhaps there are vegetations (the images are not precise enough).  Over more than 10 years of surveillance (echo and stress every 2 years), it has changed only slightly.  With the little upgrade from mild to moderate, I--like you--have not noticed any symptoms when working out, though I am a woman and do not lift heavy weights.  My doctor is not concerned, however, and tells me to continue with what I am doing, since it's obviously working well.

When this was first diagnosed, I was a little worried.  How could a person not worry?  But as time has passed, I have had to observe that I felt well back then, and I feel well now.  My doctor does not foresee the need for a transplant.

As to your symptoms, it might be helpful to know that your discomfort does not jibe with true heart problems.  It would be very unusual for a heart patient to feel tingling related to that problem in mostly the right hand and in the feet.  Likewise chest pain that migrates from left to right side is not characteristic--especially you can physically touch the painful spots.

If your hearing is tuned up (and maybe a little anxiety is involved), when you lie on your left side, you are more likely to be aware of your heartbeat, because anatomically, the heart is situated a bit to the left, and lying on the left side actually can cause its tip to be kind of smooshed against the left ribs.  This is normal and harmless, but most people are simply not aware of the sensations or sounds.  One curiosity is that studies have shown that young, healthy medical students often feel palpitations when they shift from right side to the left when lying down.  It's a benign condition.

Breathlessness, as I'm sure you know, can have many causes, but fear is certainly among them.

I think you are simply going to have to be patient and wait for the echo for your diagnosis or prognosis.  After all, you really have no choice, since you do not have enough training to diagnose or treat yourself.   And of course, worrying about the outcome will not change anything even the tiniest bit one way or the other.

Try to be hopeful.  Based on what you've said and how you have described your health, I suspect you will be reassured by your next exam.
11548417 tn?1506080564
Marc, at your age there no much choosing to do.
The mechanical valve is the only option, I think. It has a very long lifetime but comes with the price of lifelong anticoagulation medications
The tissue valves (often from pig or cow) have a limited lifespan of 10-15 years which is no option at your age.
Avatar universal
When I had my AV replaced at age 49, I chose a tissue valve, because I didn't want to be on Coumadin.  I figured I could handle the prospect of a reoperation in 12-15 years, and at that time, I would have to bite the bullet and get a mechanical valve.  I thought I could buy myself some Coumadin-free living in the meantime, though.  

I knew I was not up for having a long series of reoperations for the rest of my life.  Two valve replacement surgeries was going to be my limit.  As it turned out, my tissue valve was improperly implanted, it came unsewn from the aortic root, and I had to have it replaced after only one year.  At that time, I chose to get a mechanical valve.  Being on coumadin has not been nearly as big an issue as I thought it would be.  

You're even younger than I was when I had my first valve replacement operation, and so I agree with Ger57, I think a mechanical valve is your only realistic choice.  I have no doubt that most surgeons will be willing to implant a tissue valve in you.  I don't think you will get a lot of pushback, if a tissue valve is what you want.  But I have found out, since I had my first surgery and chose a tissue valve, that tissue valves do not usually last very many years in a young person.  Unfortunately, the younger you are, the sooner they tend to calcify and have to be replaced.  So a tissue valve for you, even if you do not have the bad luck with your surgeon that I had (and I don't expect that you will), is nothing more than a stopgap.  

There just is no artificial valve that has all of a good native valve's advantages.  But the artificial valves that are available do let you live out a normal life span and have good quality of life, and that's a great thing.
Avatar universal
I'm sorry you had such a bad luck with your surgery, but I'm happy that you overcame it. I really don't like to take any medication, so I was having basically the same rationale as you - I'd buy some 15 years time with a tissue valve, and then who knows what technology brings in the meantime. But clearly this has to be a very well thought out decision.

Still, I hope the problem is something else (as long as it's a "something else" easier to solve, of course). I'll let you all know how the exams turn out.

Thanks a lot!
Avatar universal
At your age, a tissue valve might last more like five years than 10 or 15, even if the surgery goes perfectly.  So I would not pick a tissue valve, unless you can be at peace with the possibility of a much shorter-than-expected valve life.  Of course, everything has its pros and cons, and the outcome of any choice that you make will be revealed only in the future, as you live it out.  You are correct that this simply has to be a well thought-out decision.  And then, one day, you will arrive at that time when you pays your money, and you takes your chances.  Fortunately, by the time you get to that point, any artificial valve that you can get will be better than the valve that you have, because surgeons won't operate on you until that is the case.  The other fortunate thing is that you do get to think about your choice in advance, rather than finding out that you have a valve problem at the same time you find out you need surgery.
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