My story, BAV diagnosed at 21

[newyorker86]

I've been floating around this forum for a while, so here goes...

Back in 2007, I was running quite a bit and remember getting weird sharp chest pains. My dad recently had a heart attack and for whatever reason I decided to go get checked out. The doc ordered a stress echocardiogram. The stress part was normal, my coronaries were fine. The RN helping me with the test mentioned, oh looks like you have a bicuspid aortic valve.

The report of the echo confirmed bicuspid aortic valve. I talked to my PCP about it and he said not much to worry, its common and you may or may not need heart surgery. He said at this point the measurements were normal and I didn't need any dedicated follow up and could see a cardiologist if I had symptoms.

I went on with my life. I like to stay active so I would keep running, sometimes more serious, sometimes less. One thing I did stop was weightlifting after reading about BAV online.

2 years later, I felt worried about the valve and went in again to see a new doc. I got set up with a echo, again everything was ok. I went on with my life.

3 yrs later, I was running more and it had been a while, so I noticed a bit more shortness of breath when starting up my runs. I thought it was because I was deconditioned, but in the back of my mind was concerned about my valve. After a few months of still noticing shortness of breath, I decided to go in to get checked out again. The echo showed a normal valve but dilated aorta, 3.6 cm root and 3.8 cm ascending aorta. The doc referred me to cardiology who sent me for an MRI. This demonstrated BAV, normal valve function, and dilated aortic ascending portion of 3.8 cm.

The cardio said for my height (about 6 ft) the size was top normal and just needs to be followed every 2 yrs. The valve is ok. Again I moved on with my life, and tried to think I was normal and healthy.

Then this last summer, I started running again. As it had been a while since the last echo (about 3 yrs) I was thinking about my valve in the back of my mind. I did have shortness of breath with running. Maybe some of you know about this, maybe not but my mind began to run free with the idea that possibly my valve was failing. I started to read a lot on this forum and got scared. I began to notice my heart more and thought I would notice it pounding more at night. I read posts where people would mention they were dizzy and started to notice that if I got up quickly, I would feel dizzy. I would sometimes randomly feel dizzy throughout the day.

The anxiety about my valve peaked, and I set up an appt with a doc right away. He sent me for an echo. To my surprise, it was fine. Normal valve function, and stable aortic measurements (3.6 cm root, 3.8 cm ascending).

The point I want to make is that knowing about the disease can be worse than having the disease itself. Thankfully at my age (28) my valve is fine for now. I think having BAV and knowing about it causes one to become quite hyperaware of one's heart. After the echo, I noticed that all the symptoms I thought I had pretty much vanished. I didn't feel dizzy anymore. I didn't have palpitations at night anymore. It must have been anxiety causing many of those symptoms to occur in me.

I'm not saying that symptoms don't exist. I've read many posts and I know that the valve is known to cause symptoms and problems. But I really feel that knowing I have BAV makes me hyperaware of my heart at times, to my detriment.

I certainly hope my valve lasts me a long time, possibly my entire life. I'm glad the disease is treatable. I thank all of you on this forum for sharing their stories.

I suppose I'm in the "waiting room". I'm trying to forget about this for now and trying to move forward in my life. I know I have to continue to see doctors and have tests to keep this monitored. Some things I think about: This condition is pretty common. 2 % of the population. Many people probably have no idea they have this and just move forward in life, probably only having symptoms in their 40-50's.

Those of us who have been diagnosed earlier have to live with this thought of having a heart defect that could fail at any time and need to periodically see doctors.

Its strange. I don't think i'm "sick", esp now as my valve is functioning well. But I def don't feel as well as someone who doesn't have this condition. Sometimes I feel life is sorta unfair but I know that type of thinking goes nowhere, and I know theres much worse stuff out there...

Sorry for the long post. I just wanted to share this because, I know there must be some people out there who think they have symptoms and probably drive themselves crazy reading this forums and creating anxiety instead of seeing the doctor. I would say, go get checked out so you know and don't let your anxiety over this disease take over your head, like it did for me. I hope many of us can keep our bicuspid hearts ticking for many yrs without needing OHS. To those who needed surgery earlier, I thank you for sharing your story and am glad that for almost all the post surgery life is pretty much close to normal. From New York, take care.

 

[tjay]

Very thoughtful post. There is a lot of good feedback in there, if we read carefully.

If one has BAV, knowing it sooner than later is probably a good thing. It can help you proactively monitor it, and avoid any terrible outcome. But knowing about it too early when there is nothing for you to do but to live your life (as your cardiologists would suggest), AND you start to wander around the internet and take things out of context (on your own or misguided by others), it could be very detrimental as well. And I’m afraid latter is becoming way more common than the former in this internet age.

For example, this beloved website of ours is the best thing happened to us valvers/BAVers. I don’t know what we would do without it. It’s the best thing ever happened to mankind. But if we don’t use this amazing tool and encyclopedia of information responsibly, we are not optimizing the opportunity (of timing the surgery). It’s a gift for those requiring the “valve replacement” now (hence the name) or in the foreseeable future. Of course, for those right after the surgery as well, as they recover to get back to their life. Outside of those two scenario, there are a number of other avenues to learn about and monitor your status. But it overall gravitates towards surgeries. Even in cases where the surgical outcome would otherwise not be warranted, it’s not uncommon to see recommendations for the same. Even reading on your own, you start relating to everything everyone else has (after all there is a common bond all of us have i.e. BAV), and propel ourselves toward surgeries sooner than later, perhaps. And surgeons do surgeries anyway (if you show up at their doorstep sooner), so what do they care. Our scared and nervous minds do not seem to find solace in any other way. Doesn’t matter anyone’s age (24 or 64), physical status (athlete or sedentary) or overall health status (healthy or diabetic), interestingly everyone starts to compare with each other (e.g. symptoms etc), and that also without asking or giving “complete” results/info (e.g. from echo/MRI/CT or medications etc).

So that I’m not taken out of context, the recommendations are given in good faith. And it tells us how far the medical technology has come and how safe it has become, that doing surgeries sooner than later is becoming a trend. But too soon is not very desirable either.

In addition to a number of ways this website if critically valuable to us, it would be nice to have a section sincerely dedicated to those who truly want to prolong their pre-surgical status, with the goal of never needing surgery if at all possible. Afterall, if you find out that you have BAV too early, there must be something you can do other than just waiting. There are lifestyle changes one can make and adopt alternative approaches to extend native valve’s life, for example.

Thanks you everyone, thank you valvereplacement.com. I ask for apologies if I stated anything inappropriate.

 

[Paleowoman]

My BAV was found when I was 25 quite by accident when a doctor listened to my chest as I had a bout of bronchitis. This was some time ago and really nothing much was done about it, I wasn't given regular checks, nothing ! It wasn't till I was 53, nearly 28 years later, that a doctor, a gastroenterologist, who just happened to hear its murmur said I should have it looked at again. Then I started to have regular echos. I had surgery last Januray when I was 60. I had no symptoms at any time, not when I was 25, not when I was 60, not even the day before surgery ! .

Knowing I had BAV all those years meant I think I tried to do the best for my health and heart health. When I first found out about it there was no internet and no support forums so I probably knew less then I would if it were today.

Do the best for your health overall, that's the most you can do so that if you do have to have your BAV replaced one day you are in good health !

 

[Paleowoman]

In addition to a number of ways this website if critically valuable to us, it would be nice to have a section sincerely dedicated to those who truly want to prolong their pre-surgical status, with the goal of never needing surgery if at all possible. Afterall, if you find out that you have BAV too early, there must be something you can do other than just waiting. There are lifestyle changes one can make and adopt alternative approaches to extend native valve’s life, for example.

The forum used to have more traffic and I remember several threads that were started on how to prolong the life of the BAV so as to avoid, if possible, surgery. I took (still do) vitamin K2 to help my valve as the thing that makes BAV go stenotic is generally calcification which builds up due to the turbulent blood flow which happens through the bicuspid valve as it's naturally narrower than a normal tricuspid valve. Anyway, I'm not sure the K2 I took helped or not, it certainly didn't harm and it is helpful for my osteoporosis, the original reason I took it. I now continue to take it, both for the osteoporosis and to help prolong the life of my new valve ! That's the thing, some of us will need a re-do some day so it's good to continue to do our best for our overall health and heart valve health ! There's so much we can do, keep fit, eat right and all sorts, but saying that, the big caveat is that with BAV - and re-do's - no one really knows why one person goes on to need surgery and why another doesn't. Some people with BAV need surgery when they're still a baby or young child !

 

[Steve B]

My BAV was picked up when I was 46 - after leading a very active and sporty lifestyle since my teens - so I fit your idea in the OP of some folk going through a lot of their early life with no real symptoms.
Once my BAV started to be symptomatic it seemed to deteriorate very quickly (I noticed a big change in fitness over around a three month period - with severe breathlessness when exercising hard and, thinking about it, the occasional stabbing pain as per the OP).
That all happened 3 yrs ago, when - around 6 months after the start of the diagnosis period - I had AVR to fit a tissue (pig) valve (to avoid the need for anti-coagulants, for the likely life of the valve - 10 years plus?) and got back to living life to the full (running, cycling, etc).
Unfortunately I've just - in the last couple of months - been stopped in my tracks by a serious bout of endocarditis. I needed to have my 3 year old tissue valve replaced with a mechanical (OnX) valve and have just finished my antibiotic course ... so am currently looking forward to the grind back to full fitness ...
Oh, those BAVs have a lot to answer for - but I'm so grateful for the amazing healthcare I've received over the last few months.

 

[knotguilty]

I've heard the words "cardiac cripple". My primary physician didn't want me to know too much because I only had mild stenosis. You want to be careful of worrying yourself too much. Live life! You actually have been given a great gift of this knowledge about your BAV. I hope you work to live a healthy lifestyle, exercise, and keep your cholesterol in check and there is no reason you can't go the rest of your life without ever needing surgery. Do listen to your body though.

 

[Lisa2]

I knew about my BAV for most of my life. Actually, I can't remember not knowing about it. It didn't change the way I live my life. I do agree that dwelling too much on the subject can make you a bit crazy. I think that's our kryptonite.

 

[shanwow1]

Thank you for this post. Some great reminders and things to think about for those of us in the "waiting room". I'm 27, was diagnosed with BAV almost 5 years ago. I tend to be an anxious person anyway, so this constant monitoring of how I feel gets the best of me sometimes. Last year in particular I had convinced myself that my valve was failing and that I was going to need surgery for sure. My cardiologist basically said no way, forget about this for a few months and just live a healthy lifestyle. Lo and behold, I started feeling less symptoms. I have my next follow-up at the beginning of December, and I feel more at peace with it all than ever before.

I still have a hard time when people who know about my BAV ask me "how I'm feeling". I never really know what to say. My dad in particular asks me this question almost on a weekly basis, even though he knows it drives me crazy. It's so hard to explain my symptoms, especially when I'm constantly second guessing whether they are stress related, heart related, or completely unrelated.

In terms of doing things to avoid surgery altogether, I've been told I WILL need surgery, it's just the when that's still a questions mark. So I'm trying to focus on being as fit and healthy as possible so that when the day comes, the recovery will hopefully go more smoothly.