bicusip heart valve

[birdlady50]

hello i have a bicusip  artotic heart vavle they have said i have mild angina,Is this pain coming from the valve and will it get any worse and will i have to the valve replaced or should I ask if for it to be replaeced
thanks

[mrwjd]

Open heart surgery is a fairly big deal.  Doctors generally prefer to do it when necessary, not before.  The decision for surgery is yours, of course, but your doctor's recommendation is based on (1) the degree of stenosis, that is, how small an area the valve can open to (usually 2-3 sq cm, an opening of 1 sq cm or less is considered quite severe); and (2) your symptoms.  You need to know these things, so make your doctor tell you the cross-section area and any other numbers he has..  

A congenital bicuspid valve, although not usual, is fairly common (1 or 2% I believe) among people.  Many, many people live a long life without ever even knowing they have it, although some have serious problems and need surgery as children.  You are on the young side--at 15 years older than you, they still handled my case as "young"--so you see how it is.  (Hey, there are worse things!  Who else was going to call me "young"?)

If you have not had an echocardiogram, you should do that as soon as possible, so you know what you are up against and can plan.  If you are not at the point of surgery but have some issues, they will probably have you in for an echocardiogram once a year to observe the progress of any calcification or other problems with the valve.

You might ask your doctor how likely he thinks it is that the angina is related to your aortic valve.  He won't know, of course, there are many factors involved, but he can make an educated guess.  You will want to know if you have other heart or artery problems (which can cause angina and will be taken into consideration if surgery is indicated).  I never had angina or any sort of pain, and was at 0.6 sq. cm., when it was discovered almost by a fluke, and was already sort of urgent.  

If you are not at the point of surgery, don't forget about it until you have researched the cardiothoracic surgeons in your area.  Heart surgery is pretty complicated, and there is a big difference in outcome with different surgeons, so it is worthwhile to look up statistics, and ask people who know about their reputations.

Check out another website, valvereplacement.com, which is just about this topic and may have more answers to your questions.

Good luck.

[birdlady50]

thank you for your reply. They found i had a heart mumumr first only by chance, I went in for a rountine op. and they they found the mummer then . That was 5 years ago. Two years ago i found that i got  a slight chest pain on cycling. I went to the gp . and the said that the heart mumuer was very pronounced so they sent me for a e.c .g then a heart scan they then found out  about the vavle. the then sent me for a stress test. . The next thing i knew they said i have a biscuip aortic vavle and aangina. they have put me on a gtn spray and statian tablets. , The g.p thinks that is where the pain is comumg from.May I ask you how the found yours, and did you have any symtoms
thanks and good luck

[mrwjd]

Sure, no problem.  You and I are lucky--if this isn't discovered accidentally, it is often quite silent, few or no symptoms, and eventually results in something doctors call "sudden death."  Which, by the way, means sudden death.  If you have ever known or heard about someone who was just fine and suddenly fell dead of a heart attack? this is the kind of heart problem that does it.  Which is why, when you get to cross-section 1.0 sq cm, they will want to do something.  Or as soon as you have symptoms—even if you aren’t sure about the angina, the murmur is plenty of symptom right there, and once someone has symptoms, cardiologists like to start planning surgery regardless of the cross section.

I'm wondering now. If your gp thought the angina was due to aortic stenosis, and/or knew you had an increasingly loud murmur, why he hasn't sent you to a specialist.  But of course, he may not know anything about it.  Statistics show that patients like us who go to a cardiologist have a substantially higher survival rate than those whose physician is not a cardiologist.  The surgery is done by a cardiothoracic surgeon, not your doctor, but the decisions about it and the follow-up should be done by a cardiologist.  I'm not sure what your insurance is, but DON"T LET THEM make you have a gp through this; your life may depend on it.

I discovered the condition much as you did, walked into it while I thought I was going somewhere else.  I’d had some slight lightheadedness, and for some time I’d been thinking, I really need to get some exercise; I’m in terrible shape (good thing I’m really lazy; exercise is the kind of thing that brings on the “sudden death” item).  It seemed a little worse one Friday, no big deal but I thought, it’s Friday, I don’t want to wonder about this over the weekend.  (If it had been a Tuesday, I probably would have gone back to ignoring it until the next time some little exertion made it seem kind of disturbing again.)  I called my regular doctor and left a message, I know it’s nothing, don’t want to waste time but if I stop over this afternoon, can you just listen to my chest for a second?  After a while they called back, come on over, her nurse practitioner would listen to my heart.  My 12-y-o was with me, and I casually drove to the office.  

Now I knew—I’d known for a while (which is why I didn’t want to go in) that she would say, there’s nothing wrong, but you really ought to get some exercise, and then I’d go home and lounge around all weekend.  I know I’m belaboring this point, but it is amazing what slight symptoms can indicate something pretty emergent.  She listened to my chest, “do you have a heart murmur?”  “No.”  “You do now.”  (Do you know how loud your murmur was?  Mine was 3/6, and generally they want to intervene when it hits 4/6, or earlier.)  By the time she drew blood, took a quickie in-office EKG, and stuffed four aspirin in my mouth, there were eight—yes, eight—EMTs crowded around the doorway of the tiny room where I was sitting and an ambulance and a fire truck were stopped at the front door.  [I’m thinking they may have an overstaffing issue at the fire department.]

I suggested that since I just drove there, I could drive around the corner to the hospital.  The PN pointed out that I could take the ambulance, or I could spend the next few hours having a heart attack in the ER waiting room, which they thought I shouldn’t do right then.  I didn’t care for the waiting, either, and took the ambulance.  Even then, when I had been told how serious it was, I really hadn’t taken it in; I felt fine, especially lying down—couldn’t be too big a deal.

The ER people and on-call cardiologist did a whole bunch of tests, including an angiogram, told me I was having a heart attack, and checked me in for the night.  (I’m not sure how the heart attack thing came out in the end.  I had a small troponen elevation in my blood, which is now the gold standard for having damage occurring to the heart, i.e., a heart attack.  But it was a small elevation, it went down quickly, and was gone in about four hours from the office visit.  No damage showed up afterward, and the surgeon who saw my heart up close and personal didn’t see, like, dead tissue or whatever else shows muscle damage, so I’m denying that it ever occurred.)  

Continued in next post—too long

[mrwjd]

Have you seen pictures of bicuspid and (normal) tricuspid valves?  It’s easy to see why this is a problem; when blood is pushed through, the three leaves just fly out of the way, but with a bicuspid valve they are two half-circles and they just kind of pooch and stretch back as far as they can where the halves meet.  Stenosis means the leaves of the valve are stiff and inflexible, usually from accumulations of calcium, so the opening when they are pressed becomes smaller and smaller, until it won’t support life. There are different theories about when that is—my cardiologist, very experienced, doesn’t like to mess around after 1.0 sq cm; the young guy who saw me at the hospital was willing to go with 0.6.  I met a guy recently who mentioned that he’s presently at 0.4; I wanted to sit him down immediately and tell him not to move until the surgeon arrived!  

From what I read, I should have had a year or two with the 1.0, but apparently not.   Anyway, the angiogram indicated a cross sectional area when open of 1.05—no idea what the .05 was about, maybe to make the test seem more precise than it is.  He gave me a good report, though, on the arteries, which was encouraging since I could see by then that I wasn’t particularly going to enjoy this even with just the valve.

I didn’t have emergency surgery, but I took it very light after that.  They explained that even an unusually heavy meal or sitting in a hot tube could trigger—you know.  They didn’t mention losing your temper with your kid, but from how I felt afterward, I’m pretty sure it should be on the list.  

I thought about it a while, went to see another cardiologist (I liked the hospital one, but he was pretty new—of course, at my age, they’re all kids), and dithered.  My daughter-in-law, fortunately a faculty member in the med school, emailed me one day to say don’t do anything until you hear from me, I did a favor for this cardiologist (head of the University Hospitals special cardiac unit) one time, and I’m going to call it in.  The diagnostic thing, above, was October 27/28, and on January 5 I met with him.  He did an echocardiogram, which to my surprise gives a lot more data than the invasive angiogram which actually goes inside and wanders around your arteries.  They showed 0.6 sq cm.  I doubt it progressed that fast, I think it was the equipment, but I wouldn’t count on it if I were you.  He would have called the cardiothoracic surgeon while I was sitting there, but I hadn’t gotten used to the idea of being at 0.6 (other numbers were still OK) and told him I’d come back in May.  Nice man—he didn’t laugh.  Just call when you’re ready, he said.

I called in February, was set up with the surgeon.  I had done tons of research in the meantime, by the way, which I’ll mention but not describe at the end—the point is that there are a couple of decisions you can make, but you want to know what you’re doing.  We met on Monday, agreed it was time, and he said, how about Friday?  Gulp!  No, I said, I have to make some arrangements and (I didn’t say out loud) watch over some newborn kittens for a while.  So we set it up for a couple of weeks later, March 10, a Monday.  Altogether, then, it was four months and a few days from diagnosis (from having no clue!) to surgery.  It happened on a Monday morning, I went home Friday, got waited on for three months per doctors’ orders, and now I’m back.

Decisions:  Your biggest single decision (besides your cardiologist and surgeon) is the type of valve you get, mechanical or tissue.  The trade-off is this:  The metal valve lasts forever (later, I tell my kids, it will be raked out of the crematorium oven—they hate that), but you have to take medications including a blood thinner, usually Coumadin, so it won’t produce blood clots and cause a stroke.  Very, very seldom a metal valve can fail, and the outcome is not usually good.  The tissue valve, on the other hand, is easier to live with but doesn’t last as long; after ten or twelve years, give or take, you may need to trade it in.  Until the past couple of years, if you were under 65, you got the metal valve (there are exceptions; a woman working at the hospital said she got a tissue valve as a kid, and 17 years later she opted for the metal valve because she wasn’t eager to have a third replacement, but maybe there are other reasons with kids), but recent analyses of data have made the tissue valve more realistic for younger people.  At 63, I myself chose a pig—oink, oink.  

Okay, that’s enough for today—too much, probably, but you can copy it into the word processor to read when you can’t get to sleep.  You’ll keep in touch with me, I hope, and let me know what’s happening.  If I can, I’ll answer any questions you have; you will probably have quite a few as you get closer to surgery.  There’s a ton of stuff on the internet, too much really to sort through.  

[birdlady50]

They found out i had heart murmur at the op 5 years ago but i have now found they knew I had a heart murumer when my first child was born. They said it was nothing to worry about.. I went to the g.p about a year ago I started to have chest pains when excerising. The g.p then sent me to a cardioilst. . It is the cardoilosist that dignosed the bicuspid valve and angina then sent the results to the g.p. Funny you should say that that the valve is getting stiff that is what the g.p says will happen. will I know that it needs replacing but why cant they do it now . When it it gets to the point i need the op will there be any signs . I would sooner have it done now than later. I have been told I was born with the heart defect.  If I have to have it checked every year do i ask my g.p to check or will it be checked any way. I have noticed that since I went to cardiolist the pain is getting more frequent.. I think the g.p is hoping that the angina spray and statins will help . in the valve not getting to stiff I hope you dont mind me asking you questions.
thank you for your kind understanding

[mrwjd]

"why cant they do it now . When it it gets to the point i need the op will there be any signs"
___

Because, and no.  :)

NOT NOW:  It's not at all like having your appendix out, say, in that (a) it is pretty complicated and has certain risks; and (b) when the surgery is done, you are not done with it.  Other people have said, "If I'm facing this, I want to get it over with," but the fallacy in it is that "over with" doesn't mean much with heart issues.

If you have a mechanical valve, you will be balancing medications forever (very easy for some people; other people's bodies need closer supervision with this), you will have (at least) annual echocardiograms, you will have to take antibiotics whenever you go to the dentist, you may have to do it all over again at some point (which is the biggest reason they won't do it, and you don't want it done, until necessary).  Meanwhile, they need to give you all the information they have; there is no reason you should be in the dark while a physician who may or may not be on top of the situation has your data.


NO SIGNS:  This is a pretty silent disease.  You have had symptoms, which with most cardiologists is a bell telling them it’s time to do something.  But many people never do at all.  In fact, the symptoms that took me in for a check, that discovered it, are still with me and may have had nothing to do with the aortic stenosis.  A lucky fluke!

That's why if a doctor stumbles on the fact that you were born with a bicuspid valve, which puts you at risk for aortic stenosis and thus valve replacement, they generally don’t rely on your having symptoms, but do an echocardiogram every year (or, if not stenosing yet, every few years) to keep tabs on when and if it requires surgery. [1]

I don’t know what your health care situation is.  I expect you are on the national health.  They may be set up somewhat like an HMO in the States, where the cardiologist is probably required to send you back to the gp with the test results—gp’s in HMOs here actually get annual bonuses based on how seldom they send a patient to a specialist!  But you are in a double-blind situation—you don’t have your own data, and the person who has it doesn’t know much about this condition which requires a great deal of expertise to manage safely. [2]   To start with, you have to get your test results from the clinic—then at least you can get other opinions if you have a chance.   If the condition looks well advanced, you can point out to them that survival is quite different depending on whether you are seen regularly by a cardiologist, and they need to let you do that.


MURMURING:

A heart murmur means one of the four valves in your heart isn’t opening fully or closing completely between beats (with ours, the aortic valve).  Many kids have a heart murmur from birth, that doesn’t change over time, and is eventually ignored.  Sometimes it even goes away.  I didn’t have one.  The last time I saw my gp before all this, about three years earlier, she said, Hmmm, do you have a heart murmur?  I said, no, I never have, she said it’s faint, probably not there at all, then.   When I saw her in

[birdlady50]

Once again thank you for all your help I hope you dont mind me keep asking you questions about it. One of the main things I am worried about .Mum had two stokes when she was about 50. Mum died at 54 she had endocardties and pulomary odema. Now I  I have a heart problem. It worries me if I am going to err follow  in mums footsteps so to speak.I am 49 in October. Yes I am on the n.s.h.. I now know I was born with the heart defect. I would like to be checked yearly by the cardolist . If I need the replacement i want to be peprefed for and have all the information to see me though it. I think I am going ask my g.p if i can been checked again by the cardiolst and point out . it needs keeping a eyr on. can i do that? I hope that i am not being a nusiance to you  by asking you all this.

[mrwjd]

It looks like the system truncated my last post, above.  Too long, maybe..  I'll see if I can figure out what it said, and send it on.

You said:  " If I need the replacement i want to be peprefed for and have all the information to see me though it. I think I am going ask my g.p if i can been checked again by the cardiolst and point out . it needs keeping a eyr on. can i do that?"

You can certainly ask.  I wish I knew what you can expect from the national health--I live in America and have dealt with it only once.  I was very impressed, but of course it was a child emergency at night and not a long-term major situation.  

This is what I would do--no guarantees it would work.

First, you said your gp has the test results.  Make an appointment (or, if there is a long wait, ask the receptionist to ask him) to get a copy of the record and, if possible, go over it with him.   Probably the cardiologist still has a copy, but maybe not.   I'm sure that in Britain you have a right to your medical records; I don't know whether they try to intimidate you out of seeing your file (they are so much better here than they used to be about that!)

Second, Ask the gp, nicely but outright, if he thinks you should be planning this with the cardiologist.  You really should, but if he's the gatekeeper, you don't want to offend him too much--which does not mean to back down!  If you can, meet with the cardiologist to go over the results.  

I would be interested in what your various numbers are, but you would have to be sure not to be influenced too much by anything I say, every case is different.  I am not a doctor--all I know is what I read and asked about during my own experience, which was a short time as I was diagnosed at the end of October and had surgery in March.  However, there is an entire valve replacement forum with a great deal of information at valvereplacement.com--I may have mentioned that.  

I have been extremely fortunate in my cardiologist--I write down what I want to ask, he answers the questions I remember, and then I get out my little red book.  When he sees the red book, he kind of sits back and relaxes, sometimes says something like "here we go."  He's very good that way.  I try to limit the number of questions each visit, so as not to discourage him.  But of course, it doesn't make me a cardiologist.  :)

If I were you, I wouldn't be afraid to ask the doctor questions; he can't do more than refuse, and he'll probably be okay with at least a few at each visit.  
Do not hesitate to ask for another appointment with the cardiologist.  Don't ask, don't get.  If you can get your records first and go over them, you will see how urgent it is and have some idea what to ask.  You really should have an annual echocardiogram from now on, no matter what.   And, like I said, since you seem to be symptomatic, it may go faster than this.

About your Mum:  I'm sorry you lost her so early at all, and also that you now have to worry about hereditary problems.  It is the shape of the valve that is hereditary.  Many people have other heart or circulatory problems too, but the only ones related to the valve are the valve itself, sometimes some damage to the aorta (the valve sits between the left ventricle of the heart and the aorta, a huge artery), and possible wear and tear on the left ventricle--which is a very important reason you should get this info as soon as possible; there is a big advantage in the end with avoiding major harm to the left ventricle, which will happen if it is put off too long.

If your numbers are not great (and probably not, since you are symptomatic), you definitely need to be in the care of a cardiologist.  Doctors, especially cardiologists, RESPECT this disease, and you may not have as much trouble getting good care as we fear.now--once it gets their attention.

Other heart problems like blocked arteries will be fixed in the same operation if  necessary, but they are not caused by the valve.  If you have other issues, they will probably show up on the echo.

Keep me posted.  I'll be interested to see your test results, after we've talked about it! ,