Hello everyone

[moonsmartie]

I'm a 33 (nearly 34) year old woman from England. I found out recently that I've got a BAV (sorry - can't spell it..!)

They say things are ok now, and that I might have until I'm 50 before the gruesomeness begins, but I'm quite frightened at the moment.

I've spent a while browsing through your messages, and have been partly reassured, partly more terrified..! I notice that some people have said that they were also told they had 15 years, and then after 6 months quite suddenly started having symptoms and needed OHS. I have read the brave accounts of surgery, along with comments like 'the fear was worse than the actual experience'. I hope I can be so brave when the time comes.

I was told 'Well, perhaps when you're 50-ish we'll just replace it, and after that you'll be fine' - but it seems to me that it's not that straightforward.

If you choose a natural replacement, it only lasts 10-15 years, meaning OHS again, which seems more risky the second time, and also you get more memory loss as a side effect.

If you choose a mechanical one, you're on warfarin and can never get pregnant (I'm hoping to get pregnant as I've not had a child yet, due to circumstances beyond my control). Also the clicking would drive me insane, plus a lot of people seem to say that mechanical ones are rarely fitted 100% properly, so there are still symptoms.

So, overall, I am really more anxious than I was before. Am also (sorry, vain) anxious about the *huge* scar you seem to get - I don't know if UK doctors would do a horizontal one.

I don't want to worry my husband or family, so am hoping someone can say something reassuring.... help!!

Amanda

 

[Turkey Hunter]

Every one's different

Every one's different

Amanda,

I'll start by telling you that my cardio (when I was 5 or 6) told my mother I would have to have OHS before I was 18. He lied, I lived a very active life growing up (still do) and did not have any symptoms until an aneurysm developed and surgery was required when I was 27. So, there can be a number of years before the surgery is needed.

However, each person is so different, so progression of symptoms varies from each of us. Concentrate of taking care of yourself and keep an eye on blood pressure.

Take care and welcome to our site.

Ben

 

[epstns]

Hi Amanda, and welcome!

I wouldn't panic at the mention of a bicuspid aortic valve (BAV). I, too, was told that I have a "probable bicuspid valve" but I didn't nknow until I was in my mid-50's. Obviously the valve has been that way all my life, but it wasn't noticeable until then. I've been told that I'm still "some years" away from surgery. I jog 18 to 20 miles a week and work out (light weights/high reps) 5 days a week. The reason I mention all this is that each of us is very different. The fact that we have bicuspid valves is consistent, but many of us are able to lead rather normal lives well into middle age before we have any issues with the valve. Thus, at your young age, unless you are "in trouble" now, you may well be able to have a family before you will be even close to needing surgery. I sure hope that's the case. We have a 17 year old daughter, and I would not miss the experience of having a child and raising a child for anything.

Hope all is well, stays well, and life treats you well. Again, welcome.

 

[moonsmartie]

Thank you so much for your warm replies. I can feel and (at night) hear the murmur, which bothers me, and I've just had surgery for something else and so had to go for an echo thing, which terrified me. That's when they said things are ok at the moment.

I suppose because I can feel that things aren't right, I am more scared that something will go more drastically wrong sooner rather than later. But just talking about it helps a lot.

I have a lot of questions - like I just read an article which says that artificial valves last 20-30 years, but somewhere else it said they last 100s of years... do you know which it is..?

Also, what is the significance of vitamin K?

Thank you so much for your kindness
Amanda

 

[Christian]

Mechanical valves last a lifetime. Some biological valves last 10-20 years. The older you are when you have a biological valve implanted, the longer it lasts (generally speaking).

Honestly, though, by the time you need surgery, there may be biological valves available that will last 20-30 years or longer.

My boss has a BAV. His dad had surgery to replace a BAV at the age of 56. So did my friend's father, at the age of 55. Both had mechanical valves implanted, and both live normal lives -- one 7 years post-surgery and one 9 years post-surgery.

 

[ccrawford]

Hi Amanda - I'll add my welcome. Sounds like you have plenty of time to get educated about valve replacement, but don't get complacent as plans can change. The more you learn, the more comfortable you become and all of these things cease to be a surprise. Vitamin K is primarily found in green vegetables, and is a key component in helping the blood to coagulate. If you have a mechanical heart valve, the doctors want your blood to coagulate slightly slower in order to minimize the risks for blood clots created by the existance of the mechanical valve. The coagulation factor is measured by something called the INR. Normally this is 1.0 for people not taking an anticoagulant. For someone with a mechanical aortic valve, the desired range of the INR is from 2.5 to 3.5 (There is a good chance this will change in the near future down to 2.0 to 3.0) This site has a special sub forum for coagulation issues - look under the subtitle of Coumadin which is the primary drug used for reduced coagulation. We also are fortunate to have our very own PharmD who monitors this site and keeps us all informed. You will undoubtedly see many posts by Al. Al has his own web site which is a great educational tool and I advise you to visit it. Hope this helps, Chris

 

[Raverlaw]

Amanda,

You have the chance to become very well informed long before you will need surgery, and the options will only get more attractive as future medical developments occur. I do encourage you to get regular echocardiograms (at least yearly), as bicuspid valves can develop stenosis pretty rapidly. I know that you have public health care in Britain and that there can be a long wait for "elective" surgery, so keep getting monitored and PAY ATTENTION to what your body is telling you. Watch for shortness of breath, excessive tiredness, tingling in your arms or legs, and see your doctor if you experience these.

Also, STAY HEALTHY. Keep your cholesterol down and watch your weight so that you will be a good surgical risk when the time comes.

Other than those things, you can lead a very normal life, probably for years.

I was diagnosed with a heart murmur at birth. At age 8, they did a heart cath and discovered that it was the aortic valve. I was never told to get monitored, but I was lucky, and just recently at age 49 got a stress echo and will soon have an AVR - just in time, but not too late! But my point is that I led a perfectly normal life for 49 years ('tho it was in blissful ignorance). You can too-

 

[moonsmartie]

Thank you for your replies. I think the AVR will be sooner rather than later because I have had odd symptoms just now and again since my teens ? dizziness, chest pain after a sudden shock, tingling fingers ? and only last night woke up when I felt that my right leg had gone numb (it ?came back? quickly after I turned over though). So I haven?t been entirely symptom-free, but I saw the cardiologist in September and he said things are working fine, so I?m not sure where these past symptoms came from ? perhaps the heart doesn?t work so well at some times as at others..?

But your replies have helped me so much. Before I came across this site, I had beaten my cardiologist down to a checkup every 4 years - I was hoping the whole situation would just go away! (Mind you, it didn?t help that the cardiologist?s first words to me were ?Well, we all live longer than we?re designed to these days??). But the day I posted my message here I phoned up and requested an annual check up. I feel I can face up to it with your support. I will definitely be back here when I have to face the grimness of a National Health Service hospital, if not before.

Many, many thanks again

Amanda

 

[fisher6476]

Welcome Amanda,
Just let me throw my 2 cents in as you have already received lot's of good advice from others. I recently had AVR and one of the things I learned quickly was that there a a lot of people with "troublesome valves" that go on forever with know problems. Thene there are those that should have surgery sooner rather than later. My understanding is that it can sometimes be difficult to pinpoint sometimes when surgery should be done. However, I am pretty sure that the the medical community has overwhemlingly said that one of the best indicator that surgery is needed is when symtoms start to present themselves. Make sure you Doctors know you are having symptoms. If the symptoms you describe are in fact related to your valve problem you may not want to put this off.
Steve

 

[moonsmartie]

Hi Steve. I will let the cardiologist know. I hope the symptoms are something else, or just tiredness or something.

 

[Abbanabba]

Hi Amanda,

The most important things you can do for yourself are to be as well informed as you can and to maintain regular check-ups.

The symptoms you mentioned - chest pain after a sudden shock, waking up with a numb leg - may be nothing more than "a sudden shock" and "pins & needles", which most people suffer if their circulation has been impaired from lack of movement (which sometimes happens when we sleep)..... but when you have an existing heart condition, you do need to pay closer attention to these sorts of things and certainly mention them to your cardio. He/she should be able to deterimine whether or not these symptoms are the run-of-the-mill things that most people get from time to time, or if, in fact, they are signs that your heart condition is changing.

RE: the "huge" scar.. it's not all that bad, but if it does worry you, certainly inquire into the horizontal incision. I received my "zipper" when I was 5, so it has been a part of who I am for as long as I can remember. For the most part I've never had many problems with people noticing it and I don't have a problem with wearing V-necks; although, admittedly, I stopped wearing bikinis when I grew up because I just couldn't be bothered with the constant explanations more than anything else. Besides - if you're not requiring surgery for another 15yrs, then valve replacements may well be "key-hole" surgery by then anyway. Certainly they are currently developing this technology, although it is probably at least 10yrs away from being put into practice on humans.

Meanwhile, I hope the info and advice you receive here helps put your mind at rest.

Cheers
Anna : )

 

[sylviayasgur]

hi amanda!
i truly don't have much to add to what everyone else has said_ don't think they missed a thing!
just welcome to this site, it's so great that you found us early on.
my husband, joey, was also diagnosed with a bav when he was 12 and was told he would need surgery someday.
when we met, 21 years ago, he told me about the iminent surgery. we consider ourselves so fortunate to have had almost 20 years together before joey finally needed the surgery.
it can, however, go either way. i've read about folks who didn't expect to need it as soon as they did.
still, i believe you are so much more prepared for this by just being part of this site and gaining all the info you are.
please come back and keep us posted.
be well, sylvia

 

[medtronic of borg]

Welcome

Welcome

I welcome you and I hope we haven't bombbarded you with to many responses.
Med

 

[Harpoon]

WHat that borg guy said.... =)


Welcome, this is a pretty good place for a LOT of information and learning aobut other experiences.


I just got an artificial valve in March and I'm world's better than I was (my condition is probably a lot worse than yours if you've been given that much time before having to have a seious repair)

Best advice is to educate yourself. Work with your doctors to learn about what you have and make sure you're living as healthy a lifestyle as you can. Keep active, eat right and don't worry about it too much.

I haven't heard of mechanical valves being "improperly fitted" like that. Maybe at a shoddy hospital that has shoddy surgeons who do sloppy work, but you wouldn't go there anyways right? You have the time to learn about your condition and what treatment options are available to you and where you can go to get treatment. Use that.

The coumadin thing is a bit of a drag, but for the most part, it's just like taking any other pill. You pay attention to what you're eating and how much of it, but you should be doing that anyways. The blood tests used to monitor your levels are a nusiance, but it's just that, an hour or two out of your day, maybe twice a week or once a month or whatever your docs want you to do. You're only doing that on a more frequent basis when you first get on it or if there are real problems going on.


Take a deep breath and relax. Learn about what's going on, learn how to spell bicuspid aortic valve. =Þ

 

[Jan]

Welcome

Welcome

Hi Amanda

Welcome to VR .com

Many of our members have replied to your concerns so I am sure you have enough to digest for the momment.

But I would ask for yearly check ups with the Cardiologist as things can change quickly,

I live in the UK and was initially told to expect surgery within 10 years, at a check up I was told that I would need surgery within 12 months

I waited only 6 months and yes my surgery was done on the NHS

We do not have the choices that our friends in the USA have, such as choice of surgeon, choice of date for the surgery, but most large UK cities have excellent Cardio Thoracic Centres so try and not worry too much.

If you ever want to have a chat send me a private message and I will send you my phone number

Take Care

Jan

 

[moonsmartie]

Thank you everyone for your kind replies - I feel very welcome here - you guys are wonderful

xxxxxxxx

 

[Georgia]

Hi, Amanda

Hi, Amanda

I know how you feel - it's a shock to find out there's something wrong with you when you've always considered yourself a healthy individual. When I was told I had a mitral valve prolapse in '79 I was terrified.

Well, it's certainly possible that you'll continue being good and healthy for years. Enjoy it; learn a lot here, then put the information away and live life. Be vigilant, but not hypochondriacal.

Be glad the docs leveled with you; many of us were told we had a "benign" condition and as a result didn't know to watch for problems - the result being that we didn't have surgery at an optimal time.

Glad to have you aboard.