Bicuspid Aortic Valve - 36 year old male, just looking for support/other stories

[BG122]

Hi all - has some chest/shoulder pain months ago. Which I still think is muscular.

However, had an ECG as precaution which showed up ‘left ventricular hypertrophy’ ... which sounded worrying!

Ended up having echo scan which showed up a bicuspid aortic valve. I got a letter out of the blue about 3 weeks later telling me this. Bit of a shock. Turns out it is congenital, but haven’t found right time to tell my siblings (I know I should).

My results were estimated EF 60-65%, trivial AR and normal biventricular systolic function. Spoke to consultant and he seemed relaxed - just said come in every year or so and we’ll track it, but that my heart function is ‘perfect’.

I have no real issues other than my anxiety/worries. I still have a little bit of pain in neck/back/shoulder but as above, think this is bad posture and muscle injury (had some good tissue massage which helped). My big concern is just dropping down dead as a good, very fit friend of mine did a year or so ago with heart issues - but the doc said this won’t happen.

I also can feel my heartbeat sometimes as a very powerful thud. Especially when I am lying on my front in bed. It almost feels like a hammer - very forceful. My blood pressure etc all normal, but it does worry me ... although the consultant did say I shouldn’t worry. And I think it may be related to work stress (I am under pressure at moment).

Wonder if any of that resonates with anyone else?

[Fredders]

Hi BG122, I was diagnosed with a heart murmur caused by a bicuspid valve when I was 15/16 and was told I would probably eventually need to have heart surgery to replace the valve and in the meantime they would monitor me yearly and I should just get on with my life as normal. I was then monitored yearly and it very gradually got worse until I was 52 when it got to the point of needing the valve replacing. I had a tissue valve, but unfortunately that too started leaking within a couple of years and slowly got worse and I eventually had to have a second AVR op. This isn’t very common, I was just unlucky. I had my second op a couple of years ago but this time I had a mechanical valve. I am now 61 and apart from being a couch potato am doing fine.

It’s easy to say don’t worry, but the fact that your doctor now knows about it and you are going to be monitored yearly means you are in good hands and in a better position than if you didn’t know about it. Your cardiologist will only put you forward for surgery when the valve has deteriorated enough to to warrant it. It is perfectly normal to be worried and think every little twinge is heart related. If you need to, ring the cardiology department. Mine was very good about dealing with concerns.

Hope this helps.

Wendy

[Alisbabas]

Hi,

I have the same and only found out nearly 2 years ago due to chest pain and I’m on the watch and wait yearly scans.

It is a shock but there is many people on here with the same to guide and support us.

Stay safe

Al

[stillaboveground]

Hi BG122, I can't relate to what you have but can relate to the anxiety, while we are going through this virus epidemic every thing is on hold and we are unable to see doctors to talk through our thoughts and worries. This forum is great for moral support and not being alone. Take care and keep safe.

[Hidden in reply to stillaboveground]

well now all i can say is you are lucky to have medical people who listen to your concerns ,i have had two heart attacks tripple heart by pass i eventuly had the pass op about about 30 year s ago after many trips to the hospital I lost my job because of it ,i am now 75 years old and it seems we start all over again but i dont hold out much hope this time .

[stillaboveground in reply to Hidden]

Hi 1111110, I have not been able to discuss my worries my medical team either, they never have any time for talk. I was just trying to offer a little support to BGi22. Take care and keep safe.

[Suzy61Taylor]

Hi BG122. I had an aortic mechanical valve replacement 5 years ago for stenosis. I have always been a competitive runner, which helped with my recovery. I’m 68 yrs old and my activity levels are excellent. Possibly a bit slower but I can honestly say I train and compete as I did pre op. Stay as well as you can is my advice.

[DD13]

Hi I was diagnosed with mine in 2018, after passing out at work. Mine is type 2 and they found a small asd. My heart is enlarged as well. I am 59. Due another echocardiogram this year. I would tell your siblings, may be good for you to talk to them, rather than bottle it up and keep it to yourself. You could also ring the bug helpline and talk to the nurses.

Regards Dee.

[you2me]

Without going into too much detail. About 12 months ago I discovered that I had bicuspid aorta valve. I was told because of its measurements I would have surgery quite soon . I had it in January this year. I now feel more full of energy and well being than I have for a long time . By the way I am 66 . I Have gradually been building up my fitness with walks etc . Because of the lockdown I couldn’t go to cardiac rehab for the physio workouts. They sent me the programme and phone me regular for support and advice. I do the work out every other day and the days in between I walk sometimes up to 6 miles a day . The future is not doom and gloom . So when the time comes for your procedure think of it as taking your car in for a new part. Your engine will be performing much better and putting many more miles on the clock. On advising your siblings. You must do so because if any of them have it then it could also extend to their children. I am one of ten . Two died of unrelated issues. I told them and each one went for an ECG all coming back positive. I also had checks with the genealogy. The result was it wasn’t genetic it is just me who who was born with it . Carry on doing as the medical people tell you . You are on their radar now and everything will be fine.

[BG122]

Thank you all so much - I have definitely been bottling this up (only spoken to wife about it so far). Also we’re due our first child in 3 weeks and that is an additional complexity/worry ... and I would class myself as a v laid back, unstressed person normally!

Partly it’s just the knowledge of this imperfect thing inside the most important part of my body. I see myself as fit, strong and dependable ... and this has shaken me a bit.

I do wonder if I’d prefer just not to know and then have found out in 20 years time. But all the points about being on medical radar make a lot of sense.

Weirdly, finding out that Arnold Schwarzenegger has same thing has been helpful. He’s not exactly a role model (!) but BAV certainly hasn’t held him back.

I am still concerned about feeling my heart thud so much, but I think that’s probably work stress. The scan I had was 5 weeks ago and all was perfect apparently so assuming I haven’t gone downhill since then. Any tips or advice on that issue v welcome.

Thanks so much - this is a helpful forum.

[Fredders in reply to BG122]

To be honest it never really bothered me finding out so young that I had a heart problem. Dr told me to go out and get on with my life, no restrictions etc, so I did. He said they would have to monitor me more if I got pregnant, so I didn’t! He did say he didn’t expect there to be much change until I was well into my forties and he was right. The only symptom I had eventually was breathlessness, but that was only slight. Even once they decided I needed the surgery I wasn’t really having any symptoms. So try not to think about it and get on with ‘enjoying’ your sleepless nights when the baby arrives.

I think your heart thudding could just be because at the moment you are hyper aware of anything to do with your heart. It’s probably been doing it before but you hadn’t noticed. If you are worried though, give the cardiology department a ring, just to put your mind at rest, but I’m sure once you get over the initial shock you won’t notice it so much.

Take care and enjoy being a dad.

Wendy

[you2me]

I’d like to add that though it was only discovered that I had this condition at the age of 65 . In the past whenever I’ve had a medical there was always a suspicion of an irregular heartbeat. That said I joined the Armed forces at 17 . Served an active career for a few years. Always been involved in some kind of physical active including martial arts up to my late 40s . Without having any indication of what was going on inside me. It is a good thing that you are being monitored so you can carry on with your life with the reassurance of knowing that if and when you need treatment it is there,

[Mikedabike]

Hi and welcome to the forum. I had a congenital bicuspid valve that I had been born with, in my case quite fortunately I knew nothing about it until I was 61 years old. Just prior to my 62nd birthday I had a mechanical aortic valve replacement and aortic root. Hopefully to give you some reassurance I have kept myself very fit all my life. It didn’t stop me doing athletics, basketball, rock climbing, mountaineering and hill walking, endurance and touring cycling, track cycling. I consider myself lucky that I have generally had a good diet and have never been a massive drinker. In my early fifties I noticed a slight decline in my fitness levels , coupled with being more prone to picking up coughs and sneezes. I presumed it was down to my age. In hindsight I now realise it was my valve. Try not to worry about it, now that you are aware of the condition. You are quite fortunate that if you have any worries or issues the doctors will be aware of your valve and be able to take it into account when making any diagnosis. I would venture to say that keeping active, coupled with a healthy diet will help you greatly. Just to reassure you, if and when you may need surgery. I am now only five months post open heart surgery, I have gently built up my activities. I have not done anything too strenuous, however I am already gentle hillwalking up to 18 miles in one go on my local hills. As you become more familiar with this site you will see that people in their teens and twenties are having various heart surgeries and carrying on leading good healthy lives. Hope this is if use. Good luck.

[littleboat5]

Hi all,

I know this is a long time since the original post, I've only just found this site! I was diagnosed with a bicuspid aortic valve during a routine doctors examination in my early 20's about 30 years ago. I was told I had to have yearly check ups, but after 2 checks I was told it wouldn't cause any problems and was discharged, its never been checked again!! I thought. and have been told by a nurse in a casualty department that it was a made up thing, so I'm relieved to hear that I'm not the only person with this anomaly!! I get palpitations sometimes and also get out of breath easily, especially when I'm a bit stressed. But, as all the doctors I've asked about it don't seem to think it's anything to worry about, I didn't want to make a fuss!! Only now I've been diagnosed with stage 3 hypertension and still my doctors have not suggested any kind of checks to see if my heart has been affected, I have asked, but was pretty much ignored. I think I am going to give my doctor another ring and ask for an ECG.

[Yumz199725]

Hi BG122I just came across your post sorry for a very late reply! I was born with congenital heart disease which caused a bicuspid aortic valve and the valve is severely leaky and moderately narrow. I have been told I will need it replaced eventually. I go to an annual check up for my heart as I have a lot wrong with it. I also have mild left ventricular hypertrophy with normal systolic function. I also have ventricular Tachycardia. I know your post was a long time ago so I hope your keeping well how is your bicuspid valve??