Question on symptoms...

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ScottB

Hi all... Thank God for this wonderful site and the people here!! You all are truly greatly contributing to me maintaining my "sanity" during this period of my life :)

In my previous postings I said I was diagnoised with Aortic Stenosis but I have to wait until the 28th of March to get in to see the cadrio Doc that read my echo for further evaluation and options. My question is... what kind of symptoms have other aortic stenosis people have? I'm 39, excellent health and only started getting concerned when I was experiencing SOB for simple things like climbing stairs! Now I worry that every little pain in my chest is something bad!! I called to try to get in before the 28th but I think I'm in a holding pattern until then! How did you know to go to the Doc when you al did? What kind of symptoms did you have?
 
Symptoms

Symptoms

Hi Scott,
In my case I had known about my problem for about 5 years before any real symptoms started to occur. My major symptom was that when I FIRST started to exercise (Take a Walk) I felt a shortness of breath and a funny feeling in my chest. After I walked for a while it all went away and I felt fine. I noticed over a 2 month period that it was getting worse and since I was due for my annual check up I told my doc about the problem. While these things can get worse fast usually 20 days will not make that much difference. My cardio doc told me that the main thing I should not do before my surgery was NOT to lift anything heavy causing the hart rate to go up all at once. Basically just slow down a little and don't do anything that will cause a strain all of a sudden on your heart. Most important no lifting.

Good luck and let us know how thing go.

Fred
 
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For me it was extreme shortness of breath and fatigued continuously. I was pretty much non functional in this state. That's what sent me to the doctor and that's when the diagnosis was made. Then all the testing started to confirm how bad it really was.
 
Hi Scott and welcome to this site.
I knew that I had some mild aortic stenosis in my early forties but was told at that time it was no big deal, so I didn't worry about or have it checked on a regular basis. BIG MISTAKE.
Then when I was 58 I was going way too fast one day,ran out of breath, had heavy pressure in my chest and passed out.
I thought I was gone but I woke up and that's when it was time to do something.
I had a bi-cuspid valve and didn't know it so even when I played football and ran track in high school I could go very fast but never very far. Now I know why.
I would always feel some pressure in my chest for many years when doing things like mowing my lawn and so forth.
So I had the valve replaced in '96 and to this day I feel great, and never run out of breath.
I know this is all pretty scary stuff but the people on this site will probably tell you it's not near as bad as it sounds.
 
Hey Scott, I found out after Iwoke up from a coma that my mitral stenosis had put me in...I drove myself to the hospital because I couldn't breathe and thought that I had pneumonia when I was pregnant, and ended up having to be intubated, and sent to two medical facilities before ending up at the UWMC. When I woke up, they told me what had happened, and I didn't believe it. I was only 23years old. Um, get regular checkups and I am glad you know about it before this happens to you!
 
Hi Scott,
For me it was fatigue that gradually increased as time went on. I would wake up in the middle of the night fighting to catch my breath, because the leaking of my valve was causing blood regurgitation. The fatigue was due to my heart beginning to enlarge, because it was working so hard to throw out the leaking blood flowing back into what should have been a closed valve. I would just be standing around, especially when it was quiet, and I would feel my heart go irregular; that was the regurgitation or the murmer I was feeling.
Your going to okay guy. Don't DON'T push yourself outside of your cardiologists recomendations for now. Surgery will most likely fix this problem, and if you have the heart, (pardon the pun) outside of contact sports, you can go back to what you are presently doing.
Keep us posted. Their is always someone here to listen.
God Bless you ... Mark
 
Hi Scott!

Welcome to the madness a couple of us have dubbed "The Waiting Room." I also have aortic stenosis (moderate to severe), pretty much without symptoms. It was diagnosed from evaluation of a murmur detected in a routine physical.

Until you have data from your echo, it will be frustrating (as I well know). After that, depending on the measurements, there may be yet more waiting. If your valve area and pressure gradient are good enough for now, they will not recommend surgery until you progress farther along. What they are really doing is balancing the odds of complications during surgery and after versus the odds of complications if you just wait around for it to get bad enough.

That's the frustration -- we know we have AS but we do not know when it will be bad enough to require surgery. We (at lease guys like myself) also do not know what symptoms we will experience. The cardio told me to watch for shortness of breath beyond that usually felt after a flight of stairs, fainting or angina. He also told me to continue to do my current exercise routine and let him know if I notice any abrupt changes in exercise tolerance that last more than a day or two. Along with all this, if my weight changes by 5 lbs. or more within a week, I am to call in. The one significant change was to limit weight lifts to 40 lbs. No heavy weights and no "high dynamic" activities like basketball. Also no isometric exercise, which raises blood pressure without raising heart rate.

Sorry for the long post, but just wanted to let you know that as long as you aren't in the "severe" range of the disease, they won't likely restrict you very much. Just watch for the list of possible symptoms and try not to become too crazy over every little quirk you feel. (I can attest to how tough THAT can be. . . )
 
Hi Scott

Hi Scott

I totally understand what you mean by every little ache and pain causing you to think its "the big one" or something. I've been through the same thing. I don't think a minute would go by when I wasn't thinking about what my heart was doing...or not doing.

Just like you knew the SOB wasn't normal, I think you'll know what kind of pain isn't normal. I wouldn't let your mind get the better of you, because if you let it, it will. Don't stress yourself out. I think you'll know when your body isn't happy.

Good luck, and take care of yourself.

By the way, when are we going to get some snacks, and some more comfy loungers in this "waiting room"? ;)
 
Hi Scott, for me there was no chest pain or palpitations, but I did have extreme shortness of breath on exertion. It got so I couldn't keep up with others when walking to a meeting ("you go on ahead, I need to hit the men's room"), and then I would step in there and catch my breath out of sight of anyone.

Couldn't sleep lying flat on my back or on my left side without feeling like I couldn't breathe.

Even after all that, I never went to the doctor until my regular annual physical, and even then I didn't say anything about it (I thought I was just REALLY out of shape :eek: ). He did an EKG which showed my heart was under stress (I now suspect he heard an increase in my pre-existing heart murmur which led to the EKG).
 
Mark you silly goose

Mark you silly goose

Don't make me laugh. Anyone who watches hockey knows that the Toronto Maple Leafs rule the NHL. :D

And our little Douggy Gilmour is back! :)
 
HELLO SCOTT, AND WELCOME TO A FANTASTIC PLACE!!!

My husband, Tyce, knew of his stenosis and pvc's but our cardio said he wasn't ready for a valve yet....That was January of 2002. In late May he had difficulty sleeping....that was it! No shortness of breath, no nothing except difficulty sleeping. Personally, I didn't love his color, but thought it was because he was so tired. Well, instead of him taking a sleeping pill that he had gotten from a dr, I took him to the hospital because I didn't like the sound of his breathing in bed. He was in afib and his heart rate was 196...he converted about 3 days later. That was his "sign" The end of June his valve was replaced.

I think you have to know that it can be a myriad of symptoms...difficulty sleeping was the farthest thing from being heart related that we could have ever thought.

If you're that concerned, see if you can get an earlier appointment--or a cancellation. Maybe they can squeeze you in. Good luck and you truly have found a wonderful site. I couldn't have made it through Tyce's surgery without this place....they are the greatest people in the world!!!

Evelyn
 
Patient specific stuff

Patient specific stuff

Hi Scott - Good question and a lot of good replies, but I question the validity of the replies. I've had a known murmur for about 12 years (aortic stenosis) and it has very slowly gotten worse, along with a pain in my right chest that is triggered by light to moderate excercise. Only recently, was the diagnosis of aortic stenosis made, and we're still trying to figure out where the pain is coming from. My point ? Each of our bodies is affected a little differently by this stuff, and you need to take your advise from your doctor after the appropriate diagnostic tests have been made. Doesn't sound like your doc is too worried, so relax and take some time to learn as much as you can about all this stuff. Its really pretty interesting once you get past your own fear-or at least somewhat past your own fear. You've come to the right place-there are a lot of very supportive people here that have a lot more experience with all of this than I do. Chris
 
DEAR C. CRAWFORD.....I WOULD LIKE TO KNOW WHO YOU THINK YOU ARE TO QUESTION THE VALIDITY OF MANY REPLIES ON THIS THREAD. I FEEL EVERYONE WHO HAS ANSWERED IS HONEST AND ABOVE BOARD AT TELLING HIS/HER SYMPTOMS.

EVELYN
 
Hi Scott-

It's always the best policy to try not to worry about things until it is absolutely necessary, and you can eventually fool yourself into not worrying at all, by asking yourself, "is it really necessary that I worry about this right now at this very minute". You have a doctor's appointment in a little less than 2 weeks and hopefully then you will have some answers.

In the meantime, don't do anything crazy. The advice you have gotten has been right on. Take things easy. If for any reason, you don't like how you're feeling, then get right in to the ER. It might be nothing, but let the docs there sort it out. It gives them something to do.;)

Just before Joe had his aortic valve replaced, he was playing a game of basketball, and passed out. That was 25 years ago. By the way, each valve has slightly different symptoms.

It is very true that each person has slightly different manifestations of symptoms, and conversely, it is also true that there are symptoms specific to each different valve. Plus there are all kinds of reasons for having bad valves and they all affect the heart differently, and have their own set of symptoms. And--you can have more than one kind of heart problem at the same time.

It's been our experience that the decision to recommend valve surgery is a combination of the test result numbers plus the symptoms the patient presents with. So if you are having any kind of symptoms, it is important to NOT be a macho guy or gal and not tell the doc. The doctor has to add what you are experiencing into the equation.

I wish you all the best when your appointment rolls around. Please make sure to let us know what happens.

Wishing all the other newbies well, too.:)
 
Hi Scott--I had my aortic valve replaced 4 years ago due to congenital bicuspid valve that no one knew about other than a slight murmur that I had always been told would "go away", by pediatricians as a child. I was fairly asymptomatic other than a loss of samina when running, etc.--I just thought I was getting OLD!! Point being here though is that while listening to your doctors is very important, more important is listening to your body and that "still small voice" telling you to take action. When all this came up, my cardio felt I would need surgery within 5 years. I asked why wait since I was otherwise in good health for such an operation & had good insurance. As a result, they decided to do a heart cath to determine in more detail, up close, what was going on with my valve. What they discovered was that I truly did need the surgery as soon as possible, not in 5 years! (I also had clear arteries--lucky me!). Waiting & listening and taking pictures from the outside would have been a very bad thing in my case. My doctors were glad I was not shy about expressing my feelings and that I pushed them. These cases aren't cookie-cutter, everyone is different. My advice to anyone is to have good doctors that you can personally trust, but take your own health into your hands (learn all you can) and don't be afraid to speak up if the "waiting room" doesn't seem right. Good luck, Susan:cool:
 
Scott,

After reading the posts associated with your questions I have to add my two cents. I found out I had AS when, during my annual physical, my doctor asked me if anyone told me I had a murmur. After saying no he sent me go for an echo and other tests. Two years later I underwent an aortic valve replacement. All this and I had absolutely no symptoms at all, in fact I felt great. The issue with me was the stenosis was closing down the aortic opening; it was .8 at time of surgery

This site Scott, will give you multiple opinions and perspectives that will help and comfort you as you go forward. The depth of knowledge available here is quite incredible. While the doctors and surgeons have the best information about you, I would suggest you obtain a copy of your tests, they have to give them to you, and get a second opinion as I did. After your second opinion, schedule a long talk with your doctors armed with the all information you have. Do not be afraid to ask a lot of questions.

I am now seven months post op and doing great. I was back at work three weeks after the surgery and everyday I get a little better.

Good luck,

Walter
 
Wrong choice of words ?

Wrong choice of words ?

Evelyn- If I offended you, please accept my apologies. What I really meant to say is that the symptoms can vary so widely from patient to patient that the analysis of these symptoms can often prove to be a fruitless excercise. I would never question the veracity nor the intent of the participants of this web site-I think it is a great resource. I too, was simply trying to be helpful, but this was apparently misdiagnosed. Chris
 
Hello Chris

Apologies accepted, but not necessary. I think it was the words you used, "I question the validity of the replies" that set my jaw on edge. You're absolutely right, symptoms vary greatly, but all of our members symptoms are thusly valid to them. Consider it forgotten.....and thanks.

Evelyn
 
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