Bicupsid Valve Disorder

[Bicupsidquestions]

Hi

I've recently been diagnosed with a bicuspid value disorder but haven't really been given any information about this. I'm still short of breath and my doctor is now treating me for asthma.

Can anyone give me any help or guidelines ?

[francesw47]

Hello Bicuspidquestions

I had a bicuspid valve which was replaced with a tissue valve 5 years ago. All of my siblings had a bicuspid valve and over the years we have all had to have our valves replaced. Its a fairly standard procedure for surgeons these days, but not standard for the patient.

I found the BHF information leaflets really helpful, the NHS website less so. I also spoke to the brilliant BHF helpline nurses when I was symptomatic and they were both informative and reassuring. Of course there is also this site - where you will find a lot of support.

As you will be aware bicuspid valves are the most common form of inherited heart valve problem and arise because the aortic valve has two cusps which open rather than the normal three, making them more vulnerable to calcification and eventually they may weaken/stiffen and need replacing, Some people have bicuspid valves that never become worrying, others are less fortunate.

I would not Google if I were you - lots of really dud information and much of it out of date, so not worth worrying yourself. Read the BHF leaflet on valve disease. Much depends on whether you are symptomatic and your cardiologist/GP will be able to talk you through this.

I was not symptomatic until I was 61 - and even then I would not have noticed the symptoms (a slight tendency to breathlesness on hills, stairs and some odd palpitations - and of course the famous heart murmur) but the heart murmur was spotted by my GP and the rest is history. I was observed by echocardiogram until it was felt that surgery was necessary. But be guided by your own medics - we are all different and talk your worries through with your GP. Any diagnosis can be a shock, and there are others here who have experienced same who will be along and who can also help.

Try not to worry (ha ha, we all do it) and be reassured that there are others who have had this problem, had the surgery and are now fighting fit again!

[Calliope153 in reply to francesw47]

Thank you so much for posting this - I was diagnosed with a bicuspid valve 18 months ago. I have siblings and none of them inherited it so really random chance. No heart issues with either parent. I also have an aneurysm and currently on watch and wait with the usual meds after a heart attack. I found your post really supportive and encouraging. Thank you again.

[RoyM in reply to Calliope153]

Hi much the same here. Found out i had a bicuspid aortic valve and an ascending aortic root and arch aneurysm of 4.6 cm. I am on watch and wait at LHCH. The condition was found by accident during a routine CT for my permenant AF. luckily I am completly sympton free for both conditions. I still walk miles, cycle and swim. But feel a little anxious for what I feel will be inevitable major surgery and yes I agree it is now routine for the surgeons but far from routine for us patients. I am 72. Cheers Roy

[Calliope153 in reply to RoyM]

It's in the wee small hours my anxiety gets a hold but I keep telling myself it could be years before the inevitable and just get on with things. Totally agree that it is routine for them but big event for the patient. Take care.

[RoyM in reply to Calliope153]

You too. I also take the view we are lucky to be monitored. Some people simply aren't aware of the condition especially the Aorta condition and only find out when it is usually to late. I wish I didn't have it but glad I am being watched. Good luck Roy

[Calliope153]

Changes to diet and regular exercise helps.

[Davipton]

This post and replies are very encouraging to hear. I'm 36 and have recently been diagnosed with BAV and an issue with widening ascending aortic value root. Met with the surgeon this week to discuss options to fix/repair. Am due to go back to him at the beginning of December to choose and schedule the operation. Feeling OK about it all at the moment. I'm sure that will probably change as we get closer.

[Pinkrobin]

Mine got picked up by locum hearing murmur 12 years ago. Hopefully having AVR next week at second attempt.

[flamepoint]

Somerville foundation is the heart charity for those born with a heart defect and they ,too, can offer cuseful,information and advise if you should be seen by a cardiologist specialising in congenital defects.