BAV Valve Replacement

[KatieSarah]

Hello,

I'm 36 and I have BAV with moderate/severe regurgitation. I don't suffer from tiredness, or feeling out of breath, but I do sometimes get palpitations.

I'm going for checkups at the moment to determine when I will need surgery. My heart is slightly enlarged currently.

I'm wondering whether it's better to get the surgery done sooner rather than later? I think the doctors are torn because I'm very active, fit, and classed as healthy. And as I say, I don't really have many symptoms, and would say my life is not affected currently.

I'm attending Royal Brompton Hospital in Chelsea, and so I feel that I'm in good hands. But I would appreciate learning about other people's experiences, or if they can direct me to other groups.

Many thanks,

Katie

[Larson2023]

Morning Katie

My journey was similar to you in that I was years going through the motions with 12 month checks and then 6 month checks and was still asymptomatic right up to July this year when I was forced to have surgery as I developed endocarditis, you may want to talk to your cardiologist about how to prevent that, antibiotics before and after dentist etc.

I was very fit with a severe bicuspid valve to that point, 4 months later and I’m flying again, back in the gym and going all the things I used to thanks to the fantastic medical team, I’m 50 years old by the way.

Amy questions let us know.

[road2ruin]

Hi KatieSarah, Not sure you get a choice when the surgery is done. Depending on what the doctors think your current state is, they will either defer it or put you on a waiting list with other patients. Even when you are classified as severe, it may be quite a wait.

Like you, I was very fit and healthy, or sonI thought, I was classified as severe in the May, but the OP wasn't until the end of Oct. With modern drugs and understanding, I would imagine most conditions are manageable for quite a while.

Good luck

Peter

[Gladiator1951]

I was asymptomatic when I had my surgery but my cardiologist and surgeon both suggested that I would have about 2 years to live if I didn't act. Ultimately, the decision was mine and I decided to proceed before damage was done to my heart. You said that your heart was already slightly enlarged. Degradation of heart function happens quickly once you're in the symptomatic phase.

Wishing you a great outcome.

[Hidden]

Hi, I can empathise with you for when is the best time for surgery. Thirty five or so years ago, I was told my Aortic Valve was failing. In the event it was a few years later before they decided it was time for surgery, so 29 years ago tomorrow I had my first AVR at age 33.

I'll always take the view that the younger you have surgery the better, you can move on and in many respects forget about and just get on with life. Unfortunately, you can never tell how long the degradation of the valve can take, so the when, may be taken out of your hands.

In the meantime, it would be worth considering the various valve options available.

I've not been in the Royal Brompton Hospital myself, but, from what I've read it seems as though your in good hands.

Please see attached from the hospital which you may find useful, if you haven't already seen it.

rbhh-specialistcare.co.uk/n...

Best Regards

[KatieSarah in reply to Hidden]

Thanks so much for the link. I've never heard of the Ross-Pears procedure. Definitely helpful to know about

[Lexi72]

Hi Katie

Good news that you are diagnosed and being monitored by experts. A bicuspid aortic valve is congenital so you will have had it from birth. About 1-2 per cent of the population have one.Many people with a BAV will be diagnosed in their 20s and not need an operation until 70 others need it much earlier. The optimim timing for the operation is a judgment call by your cardiologist and is very patient specific I would recommend you trust and follow their advice. Under UK NICE guidelines there is an algorithm used for when an operation may be appropriate Usually your doctor will recommend an operation if your aota or aortic root gets dilated beyond a certain point or if regurgitation gets severe so it starts damaging your heart or symptomatic or if there is severe aortic stenosis (narrowing). However there is a balance of risk calculation. The operation is very safe and generally will fix things but there are risks and it can take two or three months to recover. The cardiologist will only recommend an operation if the potential benefit outweighs the risks. So in my case I was diagnosed at 57 with a BAV with a dilated aortic root and moderate regurgitation and told I would probably need an operation in about 6 months. I am also asymptomatic. I am now 62 and have had loads of tests and am still being monitored and the doctors still think on balance even though by regurgitation has increased it is not my yet appropriate to have the operation. It is important however that you get your cardiologist to explain why they have reached the conclusion they have. I would also recommend that you talk to the British heart foundation nurses (the telephone helpline number is on the website) they were really helpful. Also try not to put your life on hold. I put off loads of stuff I was planning to do when first diagnosed as I was initially poleaxed by the diagnosis. Also if you can (very hard) try to stick to the BHF and NHS websites for information . I agree that dental health is important and keep fit if your doctor says it is OK - I am not allowed to do weights but am allowed to do most other forms of exercise including running Best wishes

[KatieSarah in reply to Lexi72]

Yes, I've definitely felt poleaxed in terms of booking holidays, applying for jobs, and so forth, as I don't know when I'll need the operation. Good advice!

[Hidden]

UK Aortic Valve Replacement Group

And

UK Aortic & Heart Defects Pre Surgery Post Surgery

Both brilliant supportive groups on Facebook