Self diagnosis? Prognosis with or without extreme exercise?

[bud4wiser]

Since this is my first post - I wanted to start off by thanking all of you for your contributions to the forums. I've been all over the Internet, searching both public websites and professional journals, yet I found information in these forums more helpful and understandable than anywhere else.

Secondly, I feel slightly embarrassed, in the sense that I am relatively healthy, and hope to live long enough to never become a heart valve replacement candidate. So please ignore me if that bothers you.

My questions have to do with the fact that I am uninsured and "underemployed" to the extent that I cannot afford to have many [any] diagnostic tests to determine my current heart health.

I've had a single echocardiogram 20 years ago that resulted in a diagnosis as aortic stenosis/insufficiency. I've read a lot about aortic heart disease and understand that often symptoms do not become severe until late in life.

I've been very active all my adult life, and am wondering if there is any "downside" in continuing really vigorous, extreme exercise.

In other words, at the age of 52, am I better off avoiding intense exercise involving maximum heart rates and focusing on simply controlling diet, weight and blood pressure. Or can intense exercise continue to delay the onset of symptoms due to valve disease?

Exactly what kind of diagnostic tool/protocol would best answer this question?

Can anyone point me to other resources? Does anyone have info on medical trials or schools that need diseased individuals for study and assessment without liability?

Thank you.

 

[Mary]

From one Missourian to another, welcome!

Problems with my aortic valve weren't discovered until I was 48 years old, and until that time I had averaged swimming one mile a day, five days a week, along with walking 5 miles, 3 times a week. I was also lifting light weights.
I didn't develop symptoms for a few years, but once I did, I had to cut back on the walking and I eventually reduced my amount of swimming. The cardiologist had me stop the weight lifting all together. However, I had aortic stenosis, not arotic insufficiency as you have.
I would suggest that if you feel you are having any symptoms, you reduce your level of exercise. In my case, my first symptom was chronic tiredness. Later on, I became short of breath and experienced episodes of lightheadness if I exercised very hard. So to answer your question, I don't think vigorous workouts can alleviate or delay valve symptoms from occuring. I think moderation would be a better approach to prevention.

Have you contacted Wash U or St. Louis U to see if they're conducting any studies? Currently there seems to be a great deal of interest in following people with bicuspid aortic valves. If you've been told you have one, that might be your ticket into securing the diagnostic tests. My surgeon, Dr. Nicholas Kouchoukos, is currently on the BAV foundation board and he is associated with Missouri Baptist Hospital. That might be an avenue for finding help.

Good luck!
Mary

 

[Karlynn]

So you haven't had an echo in 20 years - when was the last time you saw a cardiologist?

Letting things go because you feel fine is not the best approach. We have many members here who have gone into surgery wondering what the heck they were doing since they felt just fine. Sometimes your physical changes occur so gradually that you adjust to the change and your mind tells you each new change is the new "normal you".

You need to find a way to get into a doctor and get a new look at your old diagnosis. Echos are usually the first diagnostic tool when it comes to tests. CT's are also done for aortic concerns.

Welcome to our forum!

 

[Marguerite53]

Welcome! I want to cheer you on with your optimism. But I want to wave a flag of caution, also. You need to be checked out one of these days!

I am 52, AVR surgery coming up on April 18th due to aortic stenosis. NO insufficiency. I have 3 grown children. No murmurs. However, I am anxious to have them checked out as bicuspids may run in families. I DO NOT want to compromise their ability to get insurance if there is no need to worry about their condition, if they even have one. SO I've looked into research studies. Two of the kids are at large universities with teaching hospitals attached. BOTH (not close to you) have studies underway. I am sending them there to have an echo, free of charge and for very little time spent.

SO. What you can do is go on the website for Washington U in St. Louis and find the Medical Research area. Eventually you will probably find drop down lists of studies. If there isn't something exactly right, call whomever is doing something in cardiology. Even the secretaries know what is going on. They will be enormously happy to help you. I was astounded. I received almost immediate phone calls from the cardiologists themselves. There is pride in the research work they do and they seem to love conversing with their potential "subjects".

Our youngest, a girl, plays sports and I was nervous about sending her off to college without a look. I paid cash for an echo and had my cardiologist do the reading. It is not in any of her files, just mine. She has some slight insufficiency, but a beautiful Mercedes Benz tricuspid Aortic valve. For me it was worth every nickel. Had I known then about the studies, I would have done it that way.

Please get an echo done. If there is any way to get a copy of the echo you had 20 years ago, you might learn more from that (like how serious the stenosis was at that point) though it won't tell you anything about what might be going on now.

Let us know what you muster up!

Good luck.

Marguerite

 

[MikeHeim]

As for your question on intense exercise, it really depends on what you're doing. It was explained to me that lifting weights (especially heavy ones) can do a lot a damage to an already insufficient valve due to the sudden surges in blood pressure that lifting gives you. As far as cardio/endurance exercise, I was not given any restrictions until I began to have symptoms. If you are starting to get symptoms, you definitely need to tone it down a bit.

At the risk of stating the obvious, you really should do whatever you can to get insurance. I am proof that you can go from having absolutely no symptoms to absolutely needing surgery in only a couple months, and once you have symptoms there isn't a company in the world that will want to insure you. There are a couple people on this list that have had to foot the bill for their own surgery, and there is no positive side to going that route. You really don't want to end up in a position where you are paying for a $100K surgery (not to mention the follow-up appointments) for the rest of your life.

 

[Rush20]

I had AVR about 3 years ago. I had no symptoms and was taken completely by surprise that I needed almost immediate surgery. My valve was regurgitating blood back into the heart not because it wasn't closing correctly, rather because the endocarditis was creating small holes inside the valve.

Prior to my cardiologist appointment on a Monday morning, I played in a mens softball tournament the weekend prior. I played 8 games in two days in 90 degree plus temperature. After my Monday Cardio appointment, I had a pre-surgery consultation with my surgeon on Tuesday. He matter-of-factly told me, I was lucky to be alive and that my valve could have failed completely due to the high amount of activity and the rate it was deteriorating.

I don't mean to scare you with my little story, however my surgeon certainly scared me into acting fast. The heart is our strongest muscle and sometimes symptoms can go unnoticed as a result.

 

[bud4wiser]

Wow, thanks for all the great answers.

Yes, I know I have my "priorities" all backward. I was reared by a Father who hated doctors and a mother who ignored her own health to the point of sudden death at age 56. (additional risk factor - CAD, sudden death of parent)


My original diagnosis did indeed specify that I needed follow up echocardiograms, although, there was considerable lee-way to their schedule. Suffice to say, I'm in the dark - and should have had echocardiograms at least every 3 to 5 years. And according to some, perhaps yearly.
Bear in mind, at the time, I had "good" values in all other valve/chamber areas. "Good" LVH was present.

The type of exercise I'm referring to, is cycling and running, but more importantly, what I'm really asking about is whether I need to limit intensity.
Suffice to say, I've kept detailed records of my abilities, and have been satisfied with my results unitl this year. But now, I'm faced with the prospect of significant "staleness" or lack of improvement, and wondering if indeed the decline is directly related to my heart, or is just symptomatic of the aging process and poor training selections. (too much early intensity, not enough volume)

I've have made inquiries at both St Louis U. and am currently making inquiries at BJC. I'm very interested in the comment about a "cash" " "non-consult"echotape, since I already have an economical GP/cardiologist.

I've found journal articles discussing stress-testing and aortic stenosis/AVR but I couldn't understand what they define in terms of the prognosis for full blown at-will maximum exercise, like the Missouri State Roadrace Championships. (this june)

Anyway, thanks for tips, no comment left unappreciated.

 

[Nancy]

I think the only person who can tell you exactly how much exercise your heart can take would be a cardiologist. Since you haven't had any workups in a very long time, and since years ago, you were diagnosed THEN with stenosis and regurg., it's time to get yourself into the good hands of a good cardiologist.

If you are thinking that exercising to the limit can help avoid surgery. I think there are many on this site who will tell you that that won't work. And the lack of symptoms doesn't mean a great deal if your heart is overcompensating and trying to keep going by enlarging. There is a limit to how much it can be stressed. Your symptoms could be OK, but your heart might not. It will keep you in shape, and that's good, but what may be going on with your heart valves is a very different thing.

Get things checked out. It's the only way to know what is going on. And that may mean further testing.

The only person who can get thee to a cardiologist is YOU. Please take good care of yourself. Each life is precious.

 

[tobagotwo]

It's not fitness-related. You can't outrun stenosis.

Nor can you self-diagnose through exercise. Even professionals with exercise stress tests don't get very accurate.

Particularly, you should stay away from weights. I would reconsider intensity as well. One of the results of stenosis is that the stenosis also limits the blood that gets back to feed the heart, which is pumping harder to get the blood though the little hole, which means it needs more blood...You can see where this is going.

Aortic stenosis is considered by some to be a major contributor to snow-shoveler deaths.

Another thing to realize is that after 20 years, all bets are off regarding what your results were then. That was a lifetime ago. The most significant changes to your heart occur during the last three years before replacement or death (those are the only two choices). It's a downward spiral that accellerates toward the end. An axiom of stenosis is that the worse it gets, the faster it gets worse.

Get insured, or get the state to help sponsor you, or something, my friend. You need an updated echocardiogram yesterday.

Best wishes,

 

[epstns]

I think most of the good advice has already been voiced. My situation is slightly different than yours, as my stenosis results in restricted valve opening rather than incomplete closure as in your case. That said, my cardio tells me that as long as I have none of the "cardinal" symptoms (shortness of breath, angina or fainting), my exercise tolerance will be "self-limiting." In other words, if it feels like too much, it is. I have been told to limit weights lifted to 40 lbs., but to do as many reps as I want. I'm 58 years old, and continue to jog 4 miles a day (treadmill) at a 9:30 pace. Not world class, but enough to feel OK. I did notice a decline in my performance over the past 5 or 10 years (used to run 7:30 pace), and that is what drove me to the doctor, and ultimately resulted in my diagnosis. I didn't know of my stenosis until I was in my mid-50's.

My advice -- get checked out. Once you know, you can plan accordingly.

AND. . . Welcome to The Waiting Room, the virtual room in which many of us await our own turns at valve surgery. Ask all the questions you want, read all you can. The answers to all your questions are probably here.

 

[bud4wiser]

Thanks Bob, thanks Steve,

I agree, that "all bets are off" regarding my current condition. The one thing that IS known, is that valve disease does not "resolve" itself or "go-away".

The nutshell of this thread is that some guy discovers he's really starting to go downhill, rereads a echo/medical report, searches the Internet, reads a bunch about heart disease on the Merck website and rediscovers that he is indeed - screwed.

It's somewhat comforting to hear "matter-of-fact" style comments from people who have exeperience in this. Luckily, every case IS different, so maybe the reason for my decline is indeed overtraining, and maybe I'm not really being affected by heart disease. The Merck articles said there were some people who didn't produce symptoms until they were in there 60s and 70s.

Unfortunately, the "other big elephant" in the room is the possibility of my Aortic Insufficiency magnifying the effects of any coronary artery disease and actually causing left ventricular myopathy. In this is the case, hard exercise is actually damaging the heart muscle more than it's helps.

Thanks.

 

[Mary]

Unfortunately, the "other big elephant" in the room is the possibility of my Aortic Insufficiency magnifying the effects of any coronary artery disease and actually causing left ventricular myopathy. In this is the case, hard exercise is actually damaging the heart muscle more than it's helps.

Thanks.

I just want to mention that many of us have/had no coronary artery disease. Some do, but I believe the majority, don't.

 

[Marguerite53]

I just recently had my angiogram and was pronounced clean as a whistle. My father had a triple bypass 9 years ago (he's now 86) so I was quite concerned about my having clogged arteries. I do not!! Unlike you, my most intense workout is making dinner which is very often a culinary event!! I was worried.

Frankly, while I did like your optimism, I don't like your sound of denial. There are lots of options for health insurance these days, and I hope you have exhausted your pursuit of all of them before you go tempting fate by being so cavalier.

Cash-wise, I voiced my concern about my daughter to my cardiologist and asked if it were possible to get an echo without her being seen (the daughter not presenting with any murmur or need, whatsoever). She (my cardiologist) readily agreed and then offered to look over the results for me, gratis. The echo was arranged through her office (she has state of the art machines) and I paid cash on our way in the door (and garnered myself a 20% discount by doing so). I have an exceedingly wonderful cardiologist and I think she was sympathetic to my motherly concerns and wanted to keep her own patient (me) free from anxieties. It worked out well for me.

Let us know when you have scheduled your echo!!

Marguerite

 

[DuchessBear]

Welcome bud4wiser !

I agree with everyone else that you need to get checked NOW.

You really need to be evaluated by a cardiologist, but at the very least you need to get an echo. There are a number of companies that do screening tests for relatively reasonable prices. Here's one:

http://www.healthfair.com/home2.htm

Maybe you can find something like this near you.

 

[bud4wiser]

Thanks - I've made several appointments

Thanks - I've made several appointments

I have made quite a few inquiries. And I am scheduled for several appointments with different healthcare providers.

I've scheduled with the "healthfair" mobile unit as well.

I don't know why my Internet searching failed to produce that link.

I'll stop back in the forum when I learn anything new. My appointment aren't for several weeks.

Thank you again to everyone for the comments. I know most of you are dealing with far more stress and greater responsibilities than me.

Best regards to all.

 

[Nancy]

Very glad to hear about the upcoming appts. Please let us know how it goes.

 

[bud4wiser]

So I "got" my basic echo test ....

So I "got" my basic echo test ....

I drove to Memphis last Monday and had an echo done at a mobile testing bus. Even with the "drive" costs, it was far cheaper than any hospital or clinic in town.

I still have to wait 2-3 weeks for an "interpretation". The technicians on the bus - simply screen for obvious life-threatening vital signs and apparently I looked OK.

The medical evaluation or patient info form doesn't really provide for technical input - so I didn't make any comments regarding my suspected condition.

Curiously the technician made comments that conflict with my current diagnosis, so we will see -- what we will see, when I get the official "doctor generated" report.......

The main thing for me, is that I've acted on my concerns and quit 'stressing' over what may or maynot be going on with respect to my heart health.

Evidentally, psychosomantically produced heart related symptons are quite common. Especially on the average heart-topic message boards......

I'll drop in again, when I get my report.

 

[Nancy]

Quote: "Evidentally, psychosomantically produced heart related symptons are quite common. Especially on the average heart-topic message boards......"

I'm not so sure about that. I do believe that some doctors dismiss actual heart symptoms which are the result of actual conditions as psychosomatic, when they haven't done enough testing to make that a true statement.

I would be very careful if any doctor told you that it was all in your head. You already KNOW that you have a heart problem of long standing.

And by the way, there are some mitral valve problems which actually generate panic attacks and anxiety attacks, and they are physical rather than psychological.

We have way too many folks here who have been told that it was all in their heads, only to find out that their valves were deteriorating and the card. didn't have the smarts to know what was happening.

It is one of the dirty little secrets that many people find out when it is almost too late.

So, be careful with yourself, and don't let anyone dismiss you like that.

 

[Der Biermeister]

Bud - for sure you need to limit the intensity quite a bit until you get some results. And as others have said - NO WEIGHT LIFTING.

I went downhill fast with my AI -- all four heartchambers were normal and EF was 60-65% last October. I was told we'll re-evaluate in May. In the meantime I walked 4 miles per day, often pushing myself to SOB, and even having to use nitro-spray. Several times I asked my cardiologist if I was hurting myself doing this, and the answer was no.

But then, on March 15 and by accident (an unrelated hospitalization), they found I have significant LVH now and my EF dropped to 40%. AVR done a little over two weeks ago. Since then I've wondered just how much my heavy walking contributed to my decline. I'm convinced it did -- and will continue to believe this until someone convinces me otherwise.

GET-R-DONE -- at least some new tests.

 

[Karlynn]

Quote: "Evidentally, psychosomantically produced heart related symptons are quite common. Especially on the average heart-topic message boards......"

I'm not so sure about that. I do believe that some doctors dismiss actual heart symptoms which are the result of actual conditions as psychosomatic, when they haven't done enough testing to make that a true statement.

I would be very careful if any doctor told you that it was all in your head. You already KNOW that you have a heart problem of long standing.

And by the way, there are some mitral valve problems which actually generate panic attacks and anxiety attacks, and they are physical rather than psychological.

We have way too many folks here who have been told that it was all in their heads, only to find out that their valves were deteriorating and the card. didn't have the smarts to know what was happening.

It is one of the dirty little secrets that many people find out when it is almost too late.

So, be careful with yourself, and don't let anyone dismiss you like that.

Well said Nancy. I'm one of those who's symptoms were chalked up to psychosomatic problems by a doctor who believed that no young person had problems with Mitral Valve Prolapse. He prescribed Valium - which I didn't take. Instead I took my records and went to another doctor. If I'd continued to believe that doctor, I probably would not be alive now.