Confused with a bicuspid

[MichyB]

Hi. I am new here. I have always known that I had a murmer but recently it was discovered that it is a bicuspid valve. I was told that I am healthy ... good ejection fraction (65-67), only mildly stenotic etc. But, I've been following posts of others on this board who are my age (31) and who are considering surgery early and/or who are worried about their heart history.

I am so confused because a good doc at NYU told me that I should not worry ... that he will be retired before I need surgery because I am so young. I have also been following Lemonstuff's story and Christain's story on the relatives board and have come to realize more and more that young people (especially of child bearing years) have to think about these things sooner than our doctors some times tell us and I just don't know where I fit in the spectrum of this. Do I just plan to have a family and not worry about it? Do I wait for my condition to worsen before thinking of surgery?

Any others out there feel a little lost when it comes to having a heart condition when you are of child bearing years?

 

[Raverlaw]

Hi, Michy and welcome to VR! You will find this to be a very helpful forum.

A "good doc" told you not to worry? Is this doctor a cardiologist or heart surgeon? If I were in your position (I was at age 31 but didn't know it!) I would consult with at least two different cardiologists, and at least one surgeon.

It may be true that things are fine and surgery is a long ways off for you. I don't mean to scare you, but valves can go south in a hurry, and at a minimum you will probably want an annual stress echocardiogram to monitor your status. You will want to be very aware of the onset of symptoms such as shortness of breath, tiredness, tingling or numbness in the extremities or on the left side of your chest, chest pain, "blind" spots in your vision, dizziness or fainting, etc.

Waiting too long for valve replacement can cause damage to the heart muscle itself, much of which may be irreversible even after the valve is replaced. Us bi-cuspids also have increased danger of dissection or aneurysm of the aorta. If you have a physically demanding job or engage in athletics, you may need a valve sooner than you would otherwise; on the other hand, if you exercise rigorously and are in good physical shape, you may be able to put off the day of reckoning.

Child-birth can be extremely stressful to the heart, and we have several members here whose valve problems were discovered or severely exacerbated during child-birth. You should discuss all of these issues with a knowledegable and reputable cardiologist.

You will learn a lot by searching the old posts here for topics of interest to you. I encourage you to do that, and to monitor the new threads, because the topic of "when to have surgery" is always being actively discussed here and you will gain a lot of insight into the issues. We've got members here who have experienced virtually every flavor of valve disease there is; lots of valve replacement survivors (some multiple times!) and many who are in what we call "the waiting room."

And whether or not you need surgery now or in the distant future, know that thousands of people have valves replaced every year, with very good mortality rates. I'm alive today because I had my valve replaced in the nick of time- life is GOOD, and I feel better than I ever have in my whole life. It is a scary prospect, having your heart stopped and cut open, but modern medicine can handle it and you can too!

Best wishes to you!

 

[Karlynn]

Welcome to the family!

Bill gives good advice. Get other opinions, at least one being from a surgeon. As we know surgeons like to operate, so if one says you don't need to worry and can wait, consider that a good thing. Cardiologist are usually more conservative and hang on to the wait-and-see attitude. It's been the experience of many that a surgeon will be more proactive if it's warranted.

One of our members Steve Epstein has been in the "waiting room" a long time with his bi-cuspid. He just had his regular check-up and he's looking good. The key is to be aware of changes (they can sneak up on you), but live a normal life. If you are considering having children, if the doc gives you a go-ahead, sooner is probably better than later and always under the supervision of a cardiologist. I had my first child with no problems what so ever. But the pregnancy with my second child tanked my mitral valve prolapse. Who knows why, I was young (25 and 27), I sailed through that first one.

One of our members just got out of the hospital, thinking he was going in for a valve replacement of his bi-cuspid and woke up finding out that all they needed to do was shore up his aorta and the valve was performing well. There are many different ways the cards can fall, so read past posts. Don't freak out about the future, just live it a little more aware.

 

[Sherry]

Hello, Michy,
I would also like to welcome you to our wonderful forum. You have become a part of a huge community of people who can offer you much insight into your medical condition. I was diagnosed with a mitral valve prolapse in my childhood due to rheumatic fever. I lived with it for years and even had two kids in my mid-twenties. At 33, I was told by a cardiologist (whom I went to only because my ob/gyn insisted on it) that I needed surgery NOW. I had great trust in this doctor and believed what he said to me, but since I was fairly asymptomatic, I told him I wanted to put it off for a few months (summer break because I was a teacher). I sought a second opinion, which matched the first, and went in to the hospital in 1997 for a repair. When I came out, I had received a St. Jude's mechanical valve because the repair didn't work. At that point, because I was on coumadin, my future childbearing came to a halt. I selfishly felt deprived for awhile, but as I look back on it, I had two beautiful chidren already who needed their mother to be alive and well. Consider this as you go through this journey and meet with your surgeons. I want to stress that I'm not an expert on bicuspid valves and repair or replacement techniques since I dealt only with a mitral valve replacement. There are many people on this board who are more expert than I, and as you search through the threads, you can probably get some of your answers. I can tell you this though, if you ever have to take coumadin, you cannot have a baby easily. I actually did research it, and broached it with my ob/gyn, and found that the pregnancy has to be perfectly planned at which point you would be put on heparin therapy until the ob/gyn deemed it safe for the baby to put you back on much later on (late second trimester, I believe). Coumadin crosses the placenta and can cause severe birth defects. That being said though, there are plenty of doctors who would advise against it altogether. I know there is one member, Christian (whose story can be found in the significant others forum) whose wife was facing some of the same issues you are now. You may want to check his story out. Take care, Michy, and let us know how you progress.

 

[Bryan B]

Welcome Michy!

Your concerns are legitimate, and I would suggest you get some of these questions down on paper. The next time you talk to your cardio or consult with a surgeon you need to ask these questions to them. A busy cardio may never stop to think about if you have children or plan on having them or what other things are important considerations in YOUR life.

I was born with a congenital VSD and was diagnosed with aortic prolapse and moderate regurgitation at 18 years of age. I was able to live a normal life until age 43 before it "became time" to do something about it. I think the key, like others have said, is to be proactive and get regular checkups to monitor your condition. That way if something changes you won't risk permanent damage to your heart. Keep asking the questions...we're here to help, and we have a lot of bicuspid's among us (although my problems were different).

 

[Karlynn]

When I came out, I had received a St. Jude's mechanical valve because the repair didn't work. At that point, because I was on coumadin, my future childbearing came to a halt. I selfishly felt deprived for awhile, but as I look back on it, I had two beautiful chidren already who needed their mother to be alive and well.

Sherry,
Our stories are very similar. Only I didn't know about my MVP until age 22, right after I was married. My replacement came after our second child and I too felt very cheated because we had always planned to have 3. By the time my kids were in grade school I didn't feel as cheated, by junior high school I was starting to get pretty grateful I didn't have a 3rd, by high school I was looking at friends with children the age of my kids, plus a third and fourth younger and not feeling so bad. Now both my kids are in college. I'm feeling like a young empty nester at 45 while I watch my best friend next door tear her hair out over her 16 year old, which would probably have been the age of our third child had we had one. Life is good.


Michy,
The moral of this story is that life with valve issues can be managed. Your life may not proceed the way you planned, but good things can happen when an unplanned path is taken. One thing I've noticed that seems to have few exceptions with our members is the joy of life we valvers have. Things are just that much sweeter and appreciated just a bit more.

 

[Rich]

Michy,
You have already received some great advice from some very knowledgeable people here.
I found myself in your situation when I was in my early forties.
Born with a bi-cuspid valve and having mild stenosis at that time.
That doctor told me not to worry about it so I didn't.
Big mistake that almost killed me when I was 58.
The point is go ahead and live a normal life if the doctor says OK.
But make sure you get regular check-ups!!
I would say once a year at the least.

 

[mile high]

Michy,

Welcome to a place you will always find more information than you could believe and alot of compassion too.

At age 46 I was diagnosed with a heart murmur, although I knew this since I was a kid. This led to seeing a cardiologist who did an echocardiagram on my heart and discovered two things. One a bicuspid aortic valve and the other an enlarged ascending aorta. The link between these two conditions is common. The largest danger with this is that if the ascending aorta gets too large (generally surgery to fix this is recomended when it is 5 centimeters around) it will cause an anyeursem which may kill you. I did end up having surgery to replace the aortic valve with a mechanical valve along with a new ascending aorta. I had no symptoms except what they saw on echo's and Cat scans.

My point is not to scare you, it is that you need to know exactly what is going on in order to move your thought process and understanding ahead. I would recomend seeing a cardiologist and have them look at your heart. Once that is done and assuming the aorta is fine, this should be monotered annually. There is alot of information on the web to help understand this as well as the combined experiences of all this fine group of people.

One step at a time. You need more information about your condition. Let us know how it goes and this group can help provide our experiences to your condition. My life post surgery has been wonderful. I have kids and enjoy them more than I probably would have. There is always good in any circumstance.

 

[Arlyss]

Regarding Bicuspid Aortic Valve Disease

Regarding Bicuspid Aortic Valve Disease

Hi Michy,

Your confusion is very understandable, because we are at a point in time in medicine where "old thinking" is still out there regarding bicuspid aortic valve disease. The "old thinking" is that a bicuspid aortic valve represents a rather simple, harmless birth defect that will not cause problems until very late in life if at all. Many who have been told this have found out differently, and sadly not always in time to save their lives. There is a lot of variation in bicuspid aortic disease. Some people may be older before they have a problem, others are younger. The only way to know what is happening to you is to be followed by someone who knows what to look for! This is important because if only the valve is checked, an enlarged aorta can be missed!

Rich has put it very well, it can be very dangerous when what is happening in the body is not known. This congenital disease has threatened my husband's life twice: first the valve, then later the aneurysm. (He too had stenosis, and always knew he had a murmur.) You can imagine that he is monitored very carefully now, and will be for the rest of his life! He also lives a very normal, active life, as do many women with this condition. The key is to receive an accurate assessment and have accurate follow up!

This disease needs to be looked at from the big picture, not just an abnormality of the valve. When that happens, what is best for you in terms of pregnancy, etc. all can be coordinated. It all begins with understanding the details of your own specific situation.

The following will provide you some information.
http://www.cedars-sinai.edu/aorta
There is a link on the main page for bicuspid aortic disease that you may find helpful.

Best wishes in your search for answers.

Arlyss

 

[ALCapshaw2]

Welcome to our World Michy !

The only thing I can add to the excellent responses you have already received is to GET COPIES of all of your Lab and Test Results. Keep these in a folder or notebook and chart the DIFFERENCES in heart dimensions which are measured by simple non-invasive Echo cardiology tests.

Sometimes these Differences can point to the need for surgery before the numbers are out of the Normal Range.

You should also know that Tissue Valves (porcine, bovine pericardial, human cadaver, etc) 'usually' do NOT require anti-coagulation (Coumadin or Warfarin) therapy. The down side is that they wear out faster, especially in younger people and will require replacement in 8 to 15 years typically. This option CAN extend your child bearing years if that is your choice.

At this point, annual Echo Cardiology Tests sound like the way to go.

Best wishes,

'Al'

 

[Marguerite53]

Welcome!

Welcome!

Hello, Michy,

Just to add my two cents to the abundant and knowledgeable info you have already read. I am 50. I learned of my bicuspid when I was in my late 20's and was told exactly what you were told. I probably wouldn?t need anything done until I was a very old person. So, I didn't give it much thought -- I'm not a worrier. I DID, however, ALWAYS use antibiotics for dental work, always told any new doctor of my condition and had fairly regular echoes and visits to the cardiologist. I had 3 beautiful babies (all delivered while I was on antibiotics), two boys and a girl, when I was 29, 31 and 34. They were 6 pounds/3 weeks early, 8 pounds/right on time and my little girl was 10 pounds 4 oz and 3 weeks late!! Time to stop!!

I had no difficulties, had regular check-ups etc. Sailed through parenthood, life was normal and wonderful. This year, turning 50, we moved our household of 15 years. I also moved my aging father out of his sprawling home. As this was going on, I started to notice that I was getting winded while carrying things, and at the top of the stairs. Not normal. My very first cardiologist had told me to watch for certain symptoms and if I experienced them, not to wait, but to get checked out. Those were fairly simple. Chest pressure ?like someone is standing on your chest. Becoming easily winded. Dizziness.

This visit to the cardio was different, then. I am now in waiting for a Bicuspid Valve Replacement. My ?numbers? have changed and my stenosis is now moderate (increasing). There is some enlargement of the heart and that is apparently a key factor in determining when to do the surgery. Surgery is now not an option, nor is as far into the future as I had been originally told.

The only tests I have had to determine this, so far, are echos, EKG, chest x-ray and a nuclear stress test. I have sought out a more prestigious cardiologist since this time we are not dealing with simple semi-annual monitoring and I won?t be doing the surgery at my neighborhood hospital, but rather the ?good? one, downtown. I will have my second visit with her in Sept. following my first echo done by her tech in August. I will be asking to be connected to a surgeon at that time because from what I?ve learned here at VR.com, no matter how good the cardio, the surgeon really is the person you want to have assess your readiness for AVR.

Please keep reading here at VR.com. There is a wealth of information to help you better understand what you can do for yourself. Please DO get copies of all your reports and keep them. Please always use antibiotics for the procedures recommended? many here have actually had to endure what those antibiotics are meant to prevent ? Endocarditis. It sounds horrible. Ask all the questions you want of your doctor. If they are not answered to your satisfaction ? find a new doctor!

Mostly, try not to worry too much. Knowledge is power and you should funnel your energy into learning as much as you can about your condition. Every one is different and everyone?s progress is different. There are many many wonderful people here who can guide you. You have come to the right place!! Keep posting, you?ll get very helpful answers.

 

[MichyB]

Thank you all for you wonderful words of encouragement and insight. I have lurked enough to know how knowledgeable you all are, with or without MD degrees. I will continue to ask questions as this develops.

Marge ... good luck on your upcoming surgery and thanks for the story. For those who asked, I was told by a surgeon at NYU that I didn't need surgery now ... not just a cardio, but that I should get regular echos and abx for any procedure etc. Still, I have also read that childbearing can be tough on your heart so it just concerns me.

I guess everyone is different and if I don't need the surgery now, I probably should try not to worry about it ... but not worrying is easier said than done.

 

[Susan BAV]

Hi Michy and "Welcome!" -

A lot of good advice, above. Be sure and read the stories, too. It is terrific that you found this site early on. I'm so glad Hank established VR.COM! In my opinion, he may have helped save countless lives by establishing this interchange of information. For me, this site informed me that I was definitely having classic symptoms, symptoms that my local cardiologists dismissed, in one's words, as "Nothing," although my echo showed moderately severe calcific aortic stenosis! It could have been fatal to me, had I followed his medical advice to ignore it all and come back to him again in a year for another echo. My ejection fraction continued to be high, by the way, even when my valve was screaming to be replaced.

Childbearing. Motherhood. What a joy. What a decision. Especially with valve issues. Or any other significant health issues. My valve surely was compromised to some degree by two successful pregnancies and deliveries. But I was very young then too. I wouldn't change my experience, though. But there's the concern of the possible hereditary nature of the bicuspid disorder too.

I'm really glad you found this site and posted. The medical community is continuing to make remarkable improvements to this entire medical issue and the VR.COM friends are so helpful with their postings in that respect and also with their personal experiences. Best wishes to you.

 

[ALCapshaw2]

It sounds like you are OK to GO at this time.

Just be sure to keep your annual checkups, chart ALL your Echo numbers, and be sure to request an earlier Echo if you begin to experience the classic symptoms of valve disease outlined above (shortness of breath, especially with low exertion, feeling 'faint', chest pressure or pain).

And don't forget to request a prescription for pre-medicating anti-biotics for invasive procedures such as ANY and ALL Dental procedures, and upper and/or lower endoscopy (GI tests). Be sure to tell any and all Doctors you see about your valve condition.

As the 'good book' says, "Go forth and Multiply"

Have a good life!

'AL'

 

[epstns]

Hi Michy,

I've been away for the week-end, checking out my daughter's future dorm room at college. As someone mentioned, I'm the guy out here in The Waiting Room, and I've been aware of my condition for about 2 years. Prior to that, I never had a clue of a pending issue. No problems ever noted in routine physicals, military service, etc. Then, about 2 years ago at a routine physical, a new doc asked the question "How long have you had the heart murmur?" Of course, I asked "What murmur?" One thing lead to another, and I soon saw cardio #1. He treated me like he would treat any 75 year old man (but I'm only in my mid-50's!). Didn't like his manner, either. Shortly I "fired" him and chose another at a different hospital.

Cardio #2 is a far different sort of doc. He has explained many things to me about the progression of aortic stenosis, its causes and treatment. He has not forced me to change my life much at all (only told me to limit the weight I use when I work out). He has, though, caused me to be much more aware of my physical situation, what to watch for, when to call immediately, etc. He also, of course, told me about antibiotics for dental work and any other invasive testing.

My point in all this is simply to help you to realize that each case is very different from any other. If we are lucky, we will be able to conduce our lives for quite some time before we need surgery. The most important key is to know what to watch for, and to be very vigilant in watching for signs of progression of our condition -- and then to act right away.

Welcome to The Waiting Room -- hope you're here with us waiting for a long time.

 

[Jean]

Michy welcome to our place! The only comments I need add is do keep an eye on your valve's status and don't write off tiring more easily, getting sob etc to just getting older.

I was 36 when my valve was found due to a murmur that was never there before. Doctors at the U of M said to keep track of it, but not to worry...I may or may not need surgery later. At 56 it was later...sob, tiring etc. I had a homograft in '00 and feel great now. Living life to the hilt and enjoying it all.

 

[tobagotwo]

Michy, it sounds like you're on course. Annual echoes and Amoxycillin for dental work.

Al makes a good point: get your records and keep copies. They may well be helpful later. Learn to understand what the echo reports mean, so that you will be able to make your own judgements to match to your doctor's, or to help you form questions. When you start to feel symptoms, this knowledge will become important to you.

You likely have many years to go. Although it is true that childbearing will put a strain on your heart, and may push the valve work up by some small amount, it is not a given. And it should not be the thing that holds you back from living.

If it eventually works out that you do require surgery before you have children, and having children is important to you, you will still be able to opt for a tissue valve, which will likely serve you for 10-12 childbearing years. It means another surgery, but usually means you can have children.

You should view your future through the eyes of what you want, rather than the blinders of this one, repairable condition. All of your choices are still before you.

Best wishes, and don't worry yet,

 

[medtronic of borg]

My 2 cents worth

My 2 cents worth

I would only add to all this that you might consider finding a female cardiologist in your area. She will be much more in tune with you, simply by nature.

Med

 

[brendamarlene]

I was diagnosed at birth (57 years ago) with aortic stenosis. Had AVR 14 1/2 years ago with homograft at which time I was told I had had a bicuspid valve.

BUT, I had three children before I had to have any surgery. And I led a very active lifestyle---tennis, aerobics, snow skiing. During pregnancy, I was watched a little more closely, especially in my last trimester.

BUT note that my Florida cardiologist told me after two children (both boys), I should NOT have any more children. Instead of following his advice, I returned to Dr. Logue In Atlanta, who had been following me since I was a child. He gave me the go-ahead, and I am very grateful to him for his wonderful advice as I now have a beautiful daughter in addition to my two sons.

Another cardiologist told me 3 years ago that I needed to have another AVR right away. But my surgeon told me it was not necessary yet.

The point of all this----always get another opinion.

Now my surgeon says I should have second surgery within 6 months to a year since my stenosis is getting worse. I am still pretty active, although I do get more tired (but I am also getting older!). I will probably have a mechanical valve this time so as not to need a 3rd surgery ( I am planning to live to 120!). Since I have so much confidence in him I will probably go back to Alabama, but I know Cleveland Clinic is supposed to be rated number 1 now. So that is my big decision.

I would sure like to hear from others who have had resurgeries.

 

[taranjit]

Mitchy you are doing great.. congratulations!!

Mitchy you are doing great.. congratulations!!

Com'on guys... She mentioned that hers is a "mild" condition and ejection fraction>65%... Of course we need to tell her to very closely monitor it at least once a year by echo etc, using a good cardiologist or two... of course we need to tell her how serious this can become if left unattended, etc.. we can tell her what to expect in the years to come.. more importantly we should tell her what she can possible do to her lifestyle to make it not get any worse any time soon... but instead most of us are telling her horror stories she could probably not absorb all at once.. getting educated is one thing but scaring is yet another.. now that she has found valvereplacement.com, she could browse thru wealth of info out here, and see how different people with conditions of different severity did differently at different times... but when she asks a "specific" question about herself, about her "current" situation, there is no need to tell her about the worst possible scenario.. for a newcomer, it can be a very scary experience and not necessary helpful..

the age of 31 means nothing as we know it.. some people with bicuspid disease need surgrical intervention rightaway after their birth, some at age 16, some at 31, some at 46, some at 61, some at 78, while some never.... some die at the age of 99 from natural causes and never even knew that they had "bicuspid valve disease", while some die at the age of 21 in a football field from "bicuspid valve disease" which they never knew about... I don't know what this latest craze with getting "surgery sooner that later" is... I am amazed while so many have mentioned the good of surgery, no one has mentioned her the mortality and morbidity, etc - the other side of it.. I am not saying don't get surgery done at all, but at the right time.. and the right time is not necessarily the "earliest possible time"... otherwise they would have treated everyone with "bicuspid valve disease" at the age of 0.5 years just because they had it..

Mitchy, hang in there.. please find the best cardiologist in your area... get it checked at least once every year.. get yourself educated.. see what you can do to your lifestyle that can make your heart stronger and your valve less calcified with time - including exercise, eating, taking supplements and herbs.. Remember that two persons - A and B - with exactly the same problem will do significantly differently because there are so many "other" things they do differently..... Please try to be the one with the best person int his case.. and ensure that your "mild" condition and ejection fraction > 65% remains that way all your life..

good luck
taranjit