just found out I have a heart condition

[SouthWalesBicuspid]

I have never had the need to post in any forums. I am a male and just found out I have a Bicupsid valve. I have asked my 2 sons to get screened also trying to persuade my sister to get a scan. A shock to the system I am very fit etc and eat well. Very up and down and very moody also feel I am being dramatic . I am worse when I'm not working . Any tips advice greatly appreciated

[Motorman]

I think we all have a bicuspid valve (Mitral Valve) you probably have a bicuspid tricuspid valve i.e. two flaps instead of three. It is an hereditory thing. It may or may not be a problem, it is best to ask your heart doctor for a full opinion. I guess you will be on some medication or another already, or shortly will be.

[Rhinos67]

Hi there

I also had a bicuspid aortic valve that was diagnosed just over a year ago. I had severe stenosis which needed surgery and I'm now through the other side.

First bit of advice is don't Google. Try not to panic, the fact that you have no symptoms is good and the hospital will now monitor you

I did and it scared me silly!

Which valve is it and what have you been told? If its not too severe it can just be watch and wait.

Don't put your life on hold, if it's mild stenosis just carry on as you have been, but make healthy choices if you don't already.

Joanne

[Shar28]

Hello and welcome to the forum. It’s a huge shock when you’re diagnosed with a heart problem which takes time for you and your family to get their heads around. It’s normal to feel how you describe, but as you get more of a handle on your condition and what it means for you, things will settle. It takes time I’m afraid. Have you discovered the BHF nurse helpline? They’re fantastic people, really knowledgeable, friendly, kind, supportive and helpful. They help with questions, queries, feelings, etc for patients and their families too. The number is 0300 330 3311, weekdays 9-5.

You’ll read lots of people’s stories on this forum and will soon see you’re not alone, it’s ok to feel how you’re feeling, everyone is different on their own unique heart journey and whenever you want to ask something, rant, wail, winge, moan, celebrate, cheer, praise etc we’re here for you.

Is it your Aortic Valve that’s bicuspid with only 2 petals instead of the usual three? If so, my husband had that. I say “had” because at the age of 55 he had open heart surgery to replace it with a mechanical valve. It was a really scary time for us but his heart does what it needs to with no new problems since so very worthwhile. He just takes his meds and gets on with life. Which is all any of us can do.

My husband keeps a daily diary with what meds he takes (and any side effects with new meds), BP readings (frequently as first but now only when he has a review coming up) how he’s feeling (unless it’s just normal) so when he sees a doctor he can see trends and has objective data to discuss.

Also, when you have a review write down points you want to raise and questions beforehand and make sure someone is with you to act as note-taker. It’s so easy for everything to fly right out of your mind straight after an appointment and follow-up letters take forever to come through!

I hope what I’ve said is helpful. Others will doubtless be along too. Best wishes to you and your loved ones.

[bridgeit]

One thing I've learned since being diagnosed in later life with a few genetic heart issues is that having a heart condition of some description is not uncommon and doesn't necessarily mean catastrophe or that life has to radically change. I find this rather reassuring.

My cardiologist advised that he's not planning any intervention for me unless/until my heart becomes distressed, enlarged or I begin to experience serious symptoms, such as breathlessness, dizziness, chest pain and swollen ankles. These are the key things I know to look for and report, though at my age I'm not sure I'd want radical intervention anyway. Whatever, my system seems to have managed perfectly well so far despite a few cardiac irregularities. You might have a similar prognosis.

Whatever your specialist advises, try to look on the bright side. You're on a cardiologist's radar now, rather than under it. They'll keep an eye on you. You're encouraging your sons/sister to get their tickers checked (very wise). You seem to be fit and healthy and you have a functioning heart regardless of a murmur or two, so you're obviously doing something right in terms of a healthy lifestyle.

I say don't worry; stress will do quite the opposite of helping your heart. Unless/until you're advised otherwise by a specialist, just keep doing what you've been doing - and enjoy life!

[francesw47]

Hello. Its hard hearing that you have a heart condition which may, in the future, need surgery. Sort of knocks the stuffing out of you and starts the world spinning the wrong way for a while. A bicuspid aortic valve (2 leaflets instead of three) is the most common form of congenital heart problem. My parents managed a 75% hit rate in their children - thats me, my brother and my sister. How was yours diagnosed? Are you poorly/symptomatic? And most importantly what have the medics said to you about possible future surgery?

Your sons may / may not have inherited this. I have two sons - one elected to get tested (echocardiogram) which was negative, whilst the other has decided against. My daughter is also fine. But the person who probably should get herself checked out is your sister. Mine was found by the GP - she said I had a loud heart murmur.

Seems to me that your reaction is perfectly normal - the diagnosis does throw you off course. Try not to Google - information is often wrong, often out of date and frankly will scare you. Stick to reputable sites for information, eg the BHF, the NHS choices site, the Mayo Clinic and the Cleveland Clinic (now in London too). And as has been posted above, call the BHF nurses and have a chat with them. They do know what they are talking about and are patient and kind. Which is probably what you need at the moment.

Be kind to yourself and accept that this is scary, and you are, understandably, shocked and scared. The world will start spinning the right way again and you will gradually accommodate the news. And keep in touch with us, and let us know how you get on.

All the best

[dubsta]

welcome to the forum, we all wish we didn’t have to be part of. However, some fantastic support on here, some very knowledgeable people here. I was diagnosed with a bicuspid aortic valve BAV. I have been monitored by cardiologist for c2 years and in October last year he said it was time for open heart surgery. It was so scary, for me the waiting is horrible as you read too much stuff and end up in a pickle. I had my surgery in May and i am doing really well.

Go and see your cardiologist and understand what it means for you. Come back to this group and also some really good facebook groups too. Try not to google too much.

There will be someone on here who has been through it, me being one and its all ok. Try not to get too carried away with your thoughts, get to know your diagnosis and i am sure people in here will help you through.

Good luck - you are not alone.

[MickP1000]

I had a bicuspid aortic valve that seemed to be working fine to my 50s ( I had a scan ever 2 or 3 years) until cardiologist identified aortic dilation that ultimately needed surgery. At the same time they replaced my aortic valve with a metal one. My surgeon said the valve was starting to go and 2 years post surgery I am fitter than ever so I accept it did probably need replacing. Surgery and recovery were better than I feared. My advice is go with the regular monitoring. It is possible you may never need surgery but if you do whilst it is major surgery it is very routine.