aortic stenosis

[rosewynds]

I got the results of my echocardiogram today, my doctor said it showed mild aortic stenosis. I have never had a problem like this before and it really is making me nervous. My doctor told me there is nothing to do right now, except keep an eye on things.

He said that probably many years from now, I would need a valve replacement. I guess my question is, can anyone that has this tell me what I should or shouldn't do as far as my health goes, I also have high blood pressure which is controlled by Lotrel. Also should I see a cardiologist, my doctor is a family practioner.

Thank you!

Lisa

 

[CHRISE]

re: aortic stenosis

My opinion would be that all hearts are different. Mine for instance, went from "perfect" ... to.. "Shot" in two months. I too have had many problems with aortic stenosis, and it does ultimitely lead to surgery. but i would suggest getting a regular cardiologist to follow you, so you can keep a close eye on what's going on.

Better safe than sorry.

Take care & good luck

~Chrise

 

[Nancy]

Hi CHRISE and Rosewynds-

Two newbies. Welcome to this fantastic site. You're going to love the friendliness and support you'll find here. Everyone here "gets it" as far as valve problems goes. It's nice to feel that you're not alone with this problem.

My husband is the patient here. He's had 3 valve surgeries, has a pacemaker, 2 lung surgeries and lots of other medical stuff.

Rosewynds, when you're first diagnosed with stenosis, it's a shock most of the time. Some people don't have symptoms at first. It's really an individual thing as to how far and how fast the stenosis progresses. The very best thing you can do for yourself is to make sure you have followup appts. with your cardiologist and PCP. They will test you frequently and will surely let you know if and when the right time comes for surgery. There are actual measurements from the tests they give that can tell accurately how your heart is performing. If you're having no symptoms at the moment, I would live a normal life and try not to worry. Let your doc do that. Just make sure you keep in touch with them and let them know if you feel any differently. It may be that you can go a long time without surgery. I certainly hope so. There are lots of things they can do with meds in the early stages.

Wishing you both the best and hope to see you here often.

 

[ALCapshaw]

Welcome to our 'club' Rosewynds.

By all means, I encourage you to follow up with a real cardiologist. He will likely want to perform an Echocardiogram which is a non-invasive test that will enable him to 'see' your heart, valves, and blood flow.

Higher resolution pictures can be made from a Transesophagael Echogram (TEE) where they place an ultrasonic transducer down your throat, right next to your heart. A Heart Catheterization test can be used to measure pressure gradients across your valves. These tests are invasive but VERY SAFE and provide much more definitive information on the condition of your heart.

I had all three of the above tests. After getting a clear picture of my situation, my cardiologist was able to control my symptoms for another year and a few months when it became clear that I needed to have aortic valve replacement. This is major surgery, but has a VERY HIGH success rate when performed by dedicated specialists who do this type of surgery on a regular basis.

There is a LOT of good information that can be gleened from the Personal Stories section and the various Forum topics. Please feel free to ask any questions you may have. We (VR.com members) have all been survived valve replacement surgery or have family members who have and we all 'GET IT' when it comes to the fears and apprehensions experienced when facing this life saving surgery.

The rate of valve deterioration varies greatly, depending on the nature of your disease and it's cause. That is why it is so important to be tested and followed by a cardiologist. Early detection and followup offers the BEST chance for successful treatment.

Knowing that many thousands of survivors are leading productive lives goes a long way towards helping to maintain a POSITIVE Mental Attitude.

You will do fine. If you don't know of a good local cardiologist, ask your Primary Care Physician for a referal.

Where are you in Michigan?

'AL' (a transplanted Michigander)

 

[wlaldridge]

I too am a transplanted Michigander. Home town Dundee, just north of Toledo, OH. Lived in Ann Arbor, Flint, Lansing and then twenty plus years in Marquette and Iron Mountain in the UP. Where you folks?
I second Al's advice. Navy docs years ago thought my heart sounded "funnY". It was 1995 when a family doc said murmur and I had echo and stress with "mild stenosis" the cardiologist said I might be a candidate for valve in 15 to 20 years.
Never had the needed follow up for stupid reasons(my first annual follow up was scrubbed due to lack of insurance approval for it, and I just did not know what a big deal this was going to be and so soon), but I really did not take any of it seriously till I had it checked in February this year and it had gotten to "severe" stage. Now I get the replacement quicker than I expected.
Get with a good cardiologist and have regular follow ups. Follow his advice.

You have come to the right place to get good support and advice from all these great folks here. Welcome. Ask all your questions, you will get answers.

Best wishes,

 

[wweir]

Rosewynds

Welcome to the best site you could ever find. My history was very similar to yours. End result was I had my aortic valve replaced on 15 Aug of this year and I am feeling so much better today. Mind you I had no symptoms prior to the surgery. My condition was diagnosed via echocardiograms, Tee?s and heart caths.

As for advice. Don't ever hesitate to ask questions, lots of questions and have follow up tests every six months or at least yearly. Without question see a cardiologist as soon as you can.

I was told, by my cardiologist, that aortic stenosis is an occult killer and the decision to operate is based upon the gradient across the valve because the stenosis imposes a workload upon the cardiac muscle which in turns hypertrophies in response. It can grow to impair the blood supply to the muscle thereby giving rise to angina in the absence of coronary blockage, present with sudden fainting spells and sudden death with exertion, and finally heart failure that may not even be cured with valve replacement. The timing of operation is to try and do the operation just before the last three items occur. When they operated on me my gradient was .8 and my ejection function (EF) was less than 50%. These are numbers you should ask your cardiologist about. Usually when the gradient gets below 1 they want to operate.

My surgeons preference was to use a prosthetic valve of durable material (such as St. Jude) rather than a homograft or xenograft valve because the later two usually require a second operation some 8-10 years later in a high number of patients especially those with vigorous heart muscle function. The prosthetic valves on the other hand last much longer but they do require a low level of lifetime anticoagulant therapy.

A key inquiry for you to look into will be your surgeon's experience (300 heart procedures a year is considered a good indicator. Plus he or she should just operate on hearts only). The surgeon should discuss with you the type of valve replacement he favors and the reasons for such. Just as important, is the choice of an anesthesiologist and to meet with him. Many patient neglect the experience and the value of this person.

It is wise to peruse the operation before symptoms appear and your muscle and other organs are impaired.

Walter

 

[RobThatsMe]

Hi Rosewynds,

Welcome to the site. You will find some wonderful information from everyone here.

I just had a few comments to make after reading some of the great information others have already provided.

I think it is good that your doctor found the aortic stenosis at an early stage. Now that it has been identified, I would begin to see a cardiologist on a regular basis to monitor the condition. I go in to my GP annually for a physical, but I also see my cardiologist annually too. Cardiologists are the heart specialists, and I think you should see the specialist when it comes to the heart.

If your condition is not requiring surgery for years to come (as you mentioned), there may be many new advancements in heart care by the time you need the surgery, and there may be many new options to consider. In the meantime, educate yourself on this condition, establish a "Healthy Heart" life style, and keep up to date on all the new technology that is being developed for heart care. Above all, don't be afraid to live!

Wishing you good health,

Rob

 

[JimL]

Welcome to another Michigander!
I've lived in Benton Harbor, Morenci (you can't get there from here), Hopkins (only on the better maps), and now Imlay City, north of DEtroit.
I knew about my mild aortic stenosis from childhood, and had surgery almost ten months ago.
Do definitely see a cardiologist. I rely on my GP for a lot of things, but nothing serious. He's good about referring me on to a specialist.
A regular echo is a good thing to have, perhaps every year or two, depending on how serious it is.
I did everything for years, with no limitations, except that I didn't run. Life is so different since surgery that I'm thinking about trying to run, well maybe not.

 

[rosewynds]

Thank you everyone for your responses to my post, I feel alittle better after reading them. It's nice to know I'm not alone with this. This was the first time I had been to the doctor for about 10 years, I know I should have been sooner, as hypertension run on both sides of the family.

It was at the first checkup for my blood pressure when the doctor found a heart murmur, so he sent me for the echo. I never had been told I had one before, I am only 42, so I have no idea how I developed this. I definately will be asking for a referral to a cardiologist, the heart isn't anything to mess with.

Again, thank you all so much for your advice, I will be visiting this board daily I think.

Lisa

 

[mainframe]

Hi Lisa,

A doctor heard my murmur 20 years ago prior to jaw reconstruction. Didn't have it checked out for another 10 or so years. My primary wanted me to find out what this murmur was, so off to the cardiologirst I went. I told me about my bicuspid aortic valve having moderate stenosis and I would need surgery "sometime around 60 years old". I was 35.

I kind of blew it off for another 10 years, (not recommended) and last november went in for a phyisical. Seems my moderate was now severe. Took 10 years to go from 1.4 to 0.6.

Agree with the other folks who suggest finding a cardiologist you like and keep an eye on it.

Best of luck

 

[wweir]

Lisa,

Let me make a correction to my last post.

In my post I stated that ?When they operated on me my gradient was .8 and my ejection function (EF) was less than 50%. These are numbers you should ask your cardiologist about. Usually when the gradient gets below 1 they want to operate.?

-------------------------------------------------------------------------------

What I should have stated is the cross sectional area of the valve opening, not the gradient, was calculated from the echos and for me was at .8 prior to surgery. My surgeon told me that once you get below 1 you are in need of surgery.

The gradient actually refers to the pressure increase due to the valve stenosis and is measured in mm 50 to 100 getting on the high side.

Sorry for the confusion

Walter

 

[queenie61]

Lisa, I found out my supposed mitral valve prolapse wasn't that at all one and a half years ago. I had aortic stenosis just like you. It was mild and would take ten years to require surgery. I wish!! I progressed to 0.98 valve area in one year and have developed symptoms and have a surgery date scheduled for Octover 23. My Dr. says because I also have regurgitation in the valve is why my symptoms have occured thus requiring surgery. Please keep your appointments with your cardio. The symptoms seem so vague to me, could be passed off as so many other things, but the surgeon doesn't view it that way. The good part is he says I will feel so much better when I have recovered from the surgery. I can't wait, I have felt bad my entire adult life. I am looking forward to being a new woman. Find a great cardio and stick with him or her. Queenie

 

[Jean]

Welcome to the newbies:

My murmur was found when I was 36, but because I was a serious runner, the doctor felt it might just be an athletic murmur, but had it checked at the U of M...Yea another Michigander...Homer west of Jackson. I never had anymore trouble that I knew of until at 57. I think my doctor should have been monitoring it more closely, but retrospect is great.

Anyway I was in congestive heart failure by then. Still had to demand that my heart be checked...doctor thought it was my asthma...never mind that three changes of the meds hadn't helped. Cardiologist about panicked when I finally got to him.

To make a long story short...had a homograft replacing my bi-leaflet AV and I havent felt better in decades. And I don't have hardly any asthma anymore...go figure.

What to do in the meantime...keep track of your valve and depending on your case and your doctor's advice, exercise as much as you can, keep healthy. And don't worry! Good luck!

 

[wlaldridge]

Jean,

Homer is a great town. And of course so is Ann Arbor. My hometown was Dundee, just 25 miles south of Ann Arbor and 30 minutes from the Irish Hills.

The Resident Advisor in my dorm at U. of M. in 1961 was from the fine town of Homer we both took plenty of ribbing about being "hicks" from all those big city guys. Can not remember the guy's name. I think it was Vandenburg, pumphead before being on the "pump".

Anyway just had to say hooray for Michigan and the big little towns that produce great folks.

Best

 

[rosewynds]

To Jean,

You won't believe this, but I live in Homer also, what a small world. I am so glad I found this website, so many helpful people, that know how I feel. I'm still not looking forward to surgery sometime in the future, but I feel better knowing you all came through it just fine.

Lisa

 

[mamsram]

hi, I'm new and dont really know my way around. saw you on line and read your post[3rd?]. your situation is probably an earlier state similar to mine. At age 59 I had stenosis with an opening of 1.5 c.m. which was o.k.--then during a visit for high blood pressure concerns the dr. wanted me to have an echo. that echo revealed an opening of.8 c.m. I have no symptoms, am on 25mg of toprol for the b.p. oh yes, am now age 65. I am reading, listening, seeing a cardiologist , and wondering and I guess wandering[mentally].wishing you well, and stay aware. thanks for listening[?] reading? whatever bob

 

[sylviayasgur]

hi lisa!
welcome to this wonderful site. everyone here is just amazingly supportive, caring and informative. they are a great bunch of people who have helped me tremendously over the last year or so.
i have very little to add to what everyone before me said. i just want to reitterate that you do need to see a cardiologist regularly and have him/her keep on top of your condition.
my husband, joey, had aortic stenosis and insufficiency for many years (over 10!) and was encouraged to exercise and run and bike, etc. and stay fit. many cardios have different views on this, so you might want to ask.
we will be here for you and look forward to hearing what happens.
stay well, sylvia

 

[Nancy]

Hi Bob (mamsram)-

This is a wonderful site. Once you get into it, you'll love it. Sometimes on the weekend it's a little slow, but basically there are lots and lots of interesting posts.

I see that you're in the "watching" mode regarding your heart problems. I hope they never develop beyond that. While you're watching and hopefully not waiting for any other thing, it's a wonderful opportunity to read as many posts as you can, plus the personal stories. You'll learn so very much about heart problems. Knowlege is power and it really does eliminate a lot of the anxiety.

I hope to see you here often and good luck to you.

 

[mamsram]

nancy

thanks for the response and welcoming. socially, I tend to live in a cacoon so its nice to have someont reach out. It looks like you were around this area in the past. I have been thinking about brighams and womens hospital in boston when and if. also am near new england heart center[catholic med. cntr.]
I have been to upstate n.y. in the past ,visiting ,the area was rochester and grand island. again thanks...bob

p.s. as Ive said i'm new to this communication style, so feel like i'm bumpig into walls.

 

[Nancy]

Hi Bob-

You'll get used to communicating with us here. Just keep posting lots and lots. Yak away. That's what this is for. I think all of us feel isolated in one form or another. Mostly because we don't know very many other people who have the same set of problems. It's so easy to talk to others who understand. You've got lots of built-in friends right here.