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Re: sympotms and congenital heart murmur

Posted By CCF CARDIO MD - MTR on November 17, 1998 at 16:23:07:

In Reply to: sympotms and congenital heart murmur posted by Frances Sladek on November 16, 1998 at 03:52:09:






I have a heart murmur and mild aortic insufficiency due to a presumably bicuspid valve that I was born with 41 years ago. Until a few months ago, the murmur never presented any problem although I have always taken antibiotics before surgery and dental work. At a routine echocardiogram in June 1998, it was found that the gradient across the aortic valve is 56 mmHg and the valve area is 0.9 cm sq. I have had two other echos done since with similar results. Two years ago the gradient across the valve was only 46 mmHg altho I was not given that figure and assumed that everything was as it had been for the last 20 plus years. With the new higher gradient measurement my cardiologist alerted me to the fact that I might have to have a valve replacement in the near future. I was in complete shock as I never considered myself to have any heart problems whatsoever. Since then, however, either I have become genuinely more tired or much more aware of messages from my body or have been having psyochosomatic symptoms of tiredness. When I feel that I have the energy I can and do walk up 4 flights of stairs to my office. (I walked up 11 flights just a few months ago without any obvious symtpoms.) I have not had any chest pains or fainting spells (see below) but sometimes I feel like I am breathing harder than I ought to be for a given exertion (e.g., walking up a small slope). Until last June and even afterwards I would regularly do a mild workout which consisted of 20 min of moderate stairmaster plus some medium weight nautilus. My questions are: 1) Can one really go from being asymptommatic from one month to the next? 2) I understand that it is best to wait for some of the classic symptoms before having a valve replacement but I have also read reports that people with parameters close to mine can have heart attacks at an alarmingly high frequency without ever having symptoms beforehand. How long should one wait before heart surgery? Until one cannot walk up more than one flight of stairs? Two flights of stairs? (My profession is a university biochemistry professor so it is not a particularly cardiovascular job.) 3) I used to routinely stay up late at night to work, typically between 10pm and 1 am after I had put my two kids to sleep. Now, however, since June it seems that if I do this then I am unduly tired the next day. Does staying up late to work on a computer put an undue stress on the heart if one is not tired while doing it? 4) it seems that when I get a cold/flu it takes me much longer to recover than before and I feel tired for several days after the other symptoms are gone. Does an illness place a stress on the heart? Like #3, until I was told of my more serious condition, these concerns never entered my mind. I typically worked 60 hours a week plus be a mother of 2 boys and never missed a day of work due to illness -- it always seem to fall on the weekend. 5) My cardiologist at UCLA advised me that I should not lift up heavy things, such as my two year old son (~32 lbs) although my first cardiologist in Riverside never mentioned anything about that. On occasion it is impossible not to lift him up and when I do I never find it difficult. I had been doing mild weight lifting (10 to 15 lbs per arm) to train for this activity. How dangerous is it to lift such a weight? 6)  Since I am relatively young, I do not like the idea of a procine valve which would require another surgery in 8 to 10 years. However, also since I am relatively young I do not particulalry like the idea of being on anticoagulants, as required for an artificail valve. Should I consider a human heart valve replacement? 7) Can you answer questions about the reputation of particular doctors and institutions? I would most likely have any procedure done at UCLA but I could also have it done at Loma Linda University which is much closer to home. 8) After the birth of my second child two and one half years ago, I had spells of dizziness. I was checked for diabetes (hypoglycemia) and had the echo showing 46 mmHg but none of the doctors I saw could figure out the cause of the spells. The spells were definitely related to whether I had eaten regular meals. I rearranged my schedule and they disappeared for a year only to come back again this Jan, 1998. After monitoring my own glucose levels and bllod pressure levels, I finally observed that the spells were directly linked to my period so upon my ob/gyn's suggestion I started taking phytoestrogens at the critical time of the month. Whereas the phytoestrogens definitely have done the trick since I have not had any more spells since I started taking them, could there be some link to the heart? Perhaps I have been having a variation on the fainting (I have neveractually fainted or blacked out but when the spells come I have to sit down or fall down) for the past two years, but only coming at certain times of my cycle (mid cycle, exactly), without realizing it? I realize that this message is very long but since some of the questions relate to rather subtle issues I felt I should give as much information as possible. Thank you for your time and patience.



   _
Dear Frances, thank you for your question.  I'll answer each of your questions individually.
1) Can one really go from being asymptommatic from one month to the next?
Symptoms with aortic stenosis can wax and wane, but as you appear to know, the symptoms to look out for are chest pain and fainting spells.  These symptoms usually indicate progression of your aortic stenosis.
2) I understand that it is best to wait for some of the classic symptoms before having a valve replacement but I have also read reports that people with parameters close to mine can have heart attacks at an alarmingly high frequency without ever having symptoms beforehand. How long should one wait before heart surgery? Until one cannot walk up more than one flight of stairs? Two flights of stairs? (My profession is a university biochemistry professor so it is not a particularly cardiovascular job.)
It's unusual for someone with AS to have a heart attack unless they have coexistent coronary disease.  With your age and gender, I think it's unlikely that you have coronary disease, but the only way to prove this would be to have a cardiac catheterization (angiogram) to directly image the coronary arteries.   This test will probably need to be performed before you have valve replacement surgery because occult coronary disease needs to be ruled out beforehand, in case concomitant bypass surgery will be needed.   Thus, it is common practice to perform an angiogram prior to valve replacement surgery.  There is no consensus about the timing of valve replacement surgery.  With your parameters (gradient and aortic valve area), the argument could be made that aortic valve replacement (AVR) could be done now.  However, your symptoms are not that severe and could mitigate against AVR at this present time.  Depending on the type of AVR you would receive, you may require long-term anticoagulation with coumadin (see below).   Coumadin is known to be harmful to fetal development, so women who are planning a pregnancy may choose to delay surgery until after a pregnancy (but the hemodynamic stress of pregnancy may be too great with AS).  There are four basic options for AVR.  First, mechanical AVR involves a prosthetic valve (usually a St. Jude's or Carbomedics valve) that has excellent long-term durability but requires coumadin.  Second, a bioprosthetic AVR made from porcine tissue doesn't require coumadin but only lasts 10-15 years so it wouldn't be appropriate for you.  Third, an aortic valve homograft is a cryopreserved cadaveric aortic valve that is self-contained in the overlapping aortic tissues and is inserted as a whole.  While homografts have only been used for 10-15 years, results are good and coumadin is not needed.  However, there are unanswered questions regarding long-term durability with homografts.  Fourth, there is a unique form of AVR called the Ross Procedure that involves switching the pulmonic valve to the aortic position and replacing the pulmonic valve with an aortic homograft.  This surgery is very technically demanding and should only be done by a surgeon with good experience since there is a high rate of perioperative and postpoerative complications.  The benefit of a successful procedure is, however, no need for coumadin and probably the most durable aortic valve prosthesis that doesn't require coumadin.   There is a website for the Ross Procedure and the URL is http://www1.primenet.com/~carym/.  Finally, AVR can be performed via a minimally invasive approach with a 4-5 inch incision and reduced postoperative pain and recuperation.
3) I used to routinely stay up late at night to work, typically between 10pm and 1 am after I had put my two kids to sleep. Now, however, since June it seems that if I do this then I am unduly tired the next day. Does staying up late to work on a computer put an undue stress on the heart if one is not tired while doing it?
Physical and emotional fatigue may be more noticeable with progression of the AS, but shouldn't necessarily put an increased hemodynamic stress on your heart.  However,  I don't think that staying up late working on the computer is harmful, providing you get enough sleep each night.
4) it seems that when I get a cold/flu it takes me much longer to recover than before and I feel tired for several days after the other symptoms are gone. Does an illness place a stress on the heart? Like #3, until I was told of my more serious condition, these concerns never entered my mind. I typically worked 60 hours a week plus be a mother of 2 boys and never missed a day of work due to illness -- it always seem to fall on the weekend.
With AS, you may be more susceptible to the fatigue and lethargy associated with a cold/flu but again, these illnesses shouldn't stress your heart that much.  What you should avoid, however, is strenuous exercise at this point.  Moderate intensity aerobic activities are fine though.
5) My cardiologist at UCLA advised me that I should not lift up heavy things, such as my two year old son (~32 lbs) although my first cardiologist in Riverside never mentioned anything about that. On occasion it is impossible not to lift him up and when I do I never find it difficult. I had been doing mild weight lifting (10 to 15 lbs per arm) to train for this activity. How dangerous is it to lift such a weight?
The reason your cardiologist mentioned this is that with a fixed aortic valve obstruction with AS, sudden powerful movements like lifting cannot be compensated for with an abrupt increase in cardiac output past this obstruction.  The end result could be a fainting spell.  Thus, isometric exercise or weight lifting could place you at risk for this situation developing.  But, it's unreasonable to expect that you can never pick up your son.  You should just use common sense and don't do any heavy, abrupt lifting.  
6) Since I am relatively young, I do not like the idea of a procine valve which would require another surgery in 8 to 10 years. However, also since I am relatively young I do not particulalry like the idea of being on anticoagulants, as required for an artificail valve. Should I consider a human heart valve replacement?
See my answer to #2.  You will need to decide with your cardiologist and cardiac surgeon which is the best valve for you.  
7) Can you answer questions about the reputation of particular doctors and institutions? I would most likely have any procedure done at UCLA but I could also have it done at Loma Linda University which is much closer to home.
In my opinion, both institutions are excellent.  I am not able to comment on specific physicians or reputations of the institutions.  You should choose an institution based on your perception of the cardiologists and cardiac surgeons and what their outcomes are (which should be freely discussed with you).
8) After the birth of my second child two and one half years ago, I had spells of dizziness. I was checked for diabetes (hypoglycemia) and had the echo showing 46 mmHg but none of the doctors I saw could figure out the cause of the spells. The spells were definitely related to whether I had eaten regular meals. I rearranged my schedule and they disappeared for a year only to come back again this Jan, 1998. After monitoring my own glucose levels and bllod pressure levels, I finally observed that the spells were directly linked to my period so upon my ob/gyn's suggestion I started taking phytoestrogens at the critical time of the month. Whereas the phytoestrogens definitely have done the trick since I have not had any more spells since I started taking them, could there be some link to the heart? Perhaps I have been having a variation on the fainting (I have neveractually fainted or blacked out but when the spells come I have to sit down or fall down) for the past two years, but only coming at certain times of my cycle (mid cycle, exactly), without realizing it?
It's hard for me to attribute your fainting spells to your menstrual periods.  I assume from what you write the you are still menstruating, so phytoestrogens may help to regulate your cycles, but will not harm your heart.  The dizziness may be caused by the AS as well, so my guess is that it's multifactorial.
Overall, I think you should at least talk to your cardiologist about AVR at this point.  If you would like to be evaluated at Cleveland Clinic, we have an excellent surgeon, Dr. Delos Cosgrove, who has pioneered minimally invasive valve replacement surgeries and who is considered to be the preeminent valve surgeon.  Please write back if you would like to consider an evaluation here and I'll help you with a referral.  Good luck!
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies. Please feel free to write back with additional questions.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.   The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.

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