Questions about congenital aortic stenosis

[Steve Omer]

Hi,
I have a few questions about congenital AS that have come up due to my reading EMT and basic heart disorder books.  I am 30 years old, weigh 245# with body fat of 20%, and started an exercise/ weight lifting routine about 2 months ago.  The last time I had the AS checked was back in foster care about 15 years ago, at which time I was told that the AS was at 50% and would improve with age.  I live in Houston, TX.

1)  Given the various risks, costs, and problems associated with AS (particularly as I rack up the years), along with the fact that this was discovered at my birth, why would the medical folks not have fixed this problem back at my birth?

2)  While I don't get the severe chest pain and breathlessness yet, I seem to tire fairly early as compared to the other exercisers.  For example, I hit a glass ceiling at about .8 mile on the treadmill (set to 2.8 mph with no incline) with my heart rate monitor showing 142-152 at the time I stop.  Is this simply because I am out of shape or because of the AS?

3)  As a kid, I got cautioned against exercise and sports due to the AS.  However, everyone in the medical establishment preaches the value/importance of exercise and good diet practices.  What gives?  Why am I cautioned against exercise and yet the same folks tell me I need to exercise and stay in shape?

4)  Aside from the symptom of sudden death, the books mention that "once symptoms appear, it is imperative that valve replacement surgery be performed as soon as possible."  Question is -- what are the symptoms I am supposed to watch for?

5)  The various sources suggest that the valve replacement surgery will have to take place eventually.  If that is the case, would I be simultaneously sentenced to a life-long regimen of medications after the surgery?  What types of replacement valves currently exist?  What hospitals/surgeons have the most experience with this type of surgery?

6)  Since I started my exercise regimen, I have noticed that my resting heart rate hovers around 92 (as opposed to 76 before) and blood pressure hovers around 112/82 (I have a BP cuff and stethoscope).  Is the HR normal?

7)  Does exercise, along with a change to a low-fat diet, help stave off future problems associated with AS?

Thank you for your help with these questions!

[CCF CARDIO MD JMF]

1)Given the various risks, costs, and problems associated with AS (particularly as I rack up the years), along
     with the fact that this was discovered at my birth, why would the medical folks not have fixed this problem back at
     my birth?

They typically like to wait as long as possible to put in a valve as these will not increase in size as you grow and have a limited lifetime.  

     2) While I don't get the severe chest pain and breathlessness yet, I seem to tire fairly early as compared to the
     other exercisers. For example, I hit a glass ceiling at about .8 mile on the treadmill (set to 2.8 mph with no incline)
     with my heart rate monitor showing 142-152 at the time I stop. Is this simply because I am out of shape or
     because of the AS?  This may be a combination of both. It may represent your AS.  Exercise and an increase in heart rate put a particular strain on the aortic valve.

     3) As a kid, I got cautioned against exercise and sports due to the AS. However, everyone in the medical
     establishment preaches the value/importance of exercise and good diet practices. What gives? Why am I
     cautioned against exercise and yet the same folks tell me I need to exercise and stay in shape?  Exercise will increase your heart rate and might paradoxically cause a drop in blood pressure with AS.  

     4) Aside from the symptom of sudden death, the books mention that "once symptoms appear, it is imperative that
     valve replacement surgery be performed as soon as possible." Question is -- what are the symptoms I am
     supposed to watch for?  shortness of breath, chest pain and dizziness.  

     5) The various sources suggest that the valve replacement surgery will have to take place eventually. If that is the
     case, would I be simultaneously sentenced to a life-long regimen of medications after the surgery? What types of
     replacement valves currently exist? What hospitals/surgeons have the most experience with this type of surgery?

There are many alternatives including bioprosthetic valves, homografts ( human tissue) and mechanical valves.  depending on how good your heart functions prior to surgery will dictate the medications you may need.  Only the mechanical valve requires anticoagulation.  

     6) Since I started my exercise regimen, I have noticed that my resting heart rate hovers around 92 (as opposed to
     76 before) and blood pressure hovers around 112/82 (I have a BP cuff and stethoscope). Is the HR normal? this may represent a change in your valve status.  In general, a lower heart rate is better for you.

     7) Does exercise, along with a change to a low-fat diet, help stave off future problems associated with AS?  Not really.

[Gary]

re: exercise in your questions: Born w Bicuspid AV and developed both mild AS and mild AR when I was 4 yrs old (now 57).  Back then I was forbidden to do any heavy exercise, lifting, bicycling, or running. I cheated. Kept a light exercise program going but no organized competitive sports, mostly a bicycle. As I began to 'fill out' in my preteen years, the cardiologist who examined me each year noticed my mucle tissue was in excess of what he wanted to see. He told me to stop what I was doing (now 50 pushups a day)lifting some sand bags that weighed about 50 Lbs each and then I got a Strep throat infection, very bad news, that was not treated in time. Thinking it was just tiredness I continued the exercise routine and wound up with the last rites after 72 days in the hospital, the infection had badly scarred the AV and MV, possibly. I was lucky with new meds that came out at that time.

Exercise for toning is ok. That's why I have been able to go this long without having to replace the AV, but now it is time within the next 90 days, to avoid any further 'hypertrophy' of the LV, which is mild right now. My cardiologist said that if it had not been for the Strep infection and I continued to do just light toning exercises, never becoming tired from it, then I probably did more good than by being sedentary.  Protocols now call for moderate to light exercise, in the 100-120 bpm and NO
weight lifting, competitive sports, and mountain or rock climbing.

They say after the valve is repaired or replaced I may be able to run for miles, something I've never been able to do.  Hope they're right.

[Susan]

I had a congenital bi-leaflet aortic valve.  I am 52 and just had the valve replaced about 8 months ago.  Until just about this time last year, I had no idea it was a problem.  I had always been told I had a heart murmur that I would someday outgrow.  I am very healthy and never had any problems.  Got a new internist little over a year ago who wanted the murmur evaluated.  Turned out I had severe stenosis and some enlargement of the left ventricle.  For all intents and purposes, I had no symptoms, but was basically a walking time bomb for the "sudden death" symptom!  I now have a shiny new St. Judes mechanical!  The surgery was no problem--I had a worse time 18 years ago when I had an emergency C-section!  The surgery does not cause a lot of pain but some discomfort.  I was walking a mile at the end of the first week and back at work in 6.  The ticket back IS exercise like walking (aerobic type)and breathing with the spirometer.  You just have to pace yourself and the stronger you become, the more you do.  My daughter is a pre-med student and we visited the Texas Heart Institute a couple of months before my surgery and I can tell you, you have a great facility right there in Houston.  I had a great surgeon here in my city as well.  Many people travel far to have this done, but from experience, if you can avoid that and the stress that goes with it, then do avoid it and stay close to home!  It is also easier to address complications also.  I had none fortunately, but one never knows.  Anyway, good luck and message baack if you would like to know anything more specific from a "been there, done that" perspective!   Susan

[Brian RN]

1.Prob. due to it being a very mild case, inwhich the riskes with surgery did not out wt. the condition.
2.Prob. alittle of both.
3.They were speaking to a general audience. With AS your exersise should have been limited.
4.a decrease in endurance.
5.there are three types of valves,mechanical,homograft,pig.Yes meds would be ness. for the rest of your life.
6.no it should have gone down not up.
7.can't hurt!!
I had AS when I was younger, now 36 I will be having my aortic valve replaced on thurs.

[Steve Omer]

Susan, I understand from my readings that mechanical valves (such as the St. Judes) also sentence one to a lifelong requirement of taking medication.  Is this the case?  I also understand that there are other types of replacement valves (such as the one made from porcine tissue) and the books even mentioned a procedure called the Ross Procedure.  If I may be bold enough to ask -- what made the doctor decide on a St. Judes for your case, as opposed to the Ross Procedure or one of the valves that doesn't require the lifelong medication?

[CCF CARDIO MD JMF]

Thanks for all your comments.