Valve Register

[Brolly_Dolly]

I've had Aortic Stenosis since birth, and AFib and arythmia since 2009. I've recently had pericarditis which was treated in hospital with meds. I often have chest pain and after seeing my GP, he referred my info to a cardiologist. My GP has sent me a text message to say I have been put on the Valve Register. I can't find any info about what this is. I've spoken to a receptionist at my GP's surgery but they don't know either! Can anyone adadvise please?

[Yumz199725]

I've never heard of this? Does this mean on a list to have your valve checked, I tried looking it up didn't help.

[Brolly_Dolly in reply to Yumz199725]

I've done lots of Google searches but nothing other than studies and research. I'll keep trying.

[Ramilia]

Brolly_Dolly,

Maybe this article gives a starting point for you: bhf.org.uk/what-we-do/birth...

[Ramilia]

Also if you Google 'United Kingdom Heart Valve Registry,' you'll find a whole lot of research papers which mention the registry.

[Hidden]

Hi, I'd suggest that it's a good thing and them being proactive. It allows them to keep tabs on you, hopefully ensuring that you receive appts on time, picking up linked problems earlier etc. It all depends on how they use the data, it can also be useful when determining if patients are in 'at-risk' groups.

Take me, I'm on at least three lists that I'm aware of, 1) Valve Surgery, 2) LVSD and 3) CKD - recently added following a trawl of practice records aided by other lists.

[Brolly_Dolly in reply to Hidden]

thank you. I was told some years ago that I'd need a valve replacement so that must be what it is.

[dubsta]

Could it be the valve clinic? Different GPs and Hospital Trusts use different terminology.

[Brolly_Dolly in reply to dubsta]

It could be, and as you say they all seem to have a different name for the them depending where we live.

[Blackcatsooty]

Hello Brolly Dolly

My local hospital has had a complete overhaul in the cardiology department. I now get an annual letter/phone call to check my heart. And the check up is just brilliant. Two scans and then discuss the results with a senior nurse. No waiting for results, just brilliant. And I don’t need to see my consultant. Senior nurse will refer to her if needed. I have had my aortic valve replaced. So I guess I am now on a new “register”.

My local hospital cardiology was very decent before. Now it is even better.

My mild stenosis was steady for about six years. Then moderate stenosis but then severe stenosis within a year. New valve fitted by incredible surgeons in a fabulous ward where staff were so good. If only the whole NHS could be uplifted to that level.

But I am fine three years on. I have a non mechanical valve and I don’t even know it’s there.

So whilst you chase around to see what a valve register means ( trust you will let us all know) please be assured the future is very good.

Best wishes

Sooty

[Brolly_Dolly in reply to Blackcatsooty]

Many thanks for the info. I'm so glad you've been well cared for and you have a very proactive health authority where you live. I am getting worried although the stenosis is currently mild. I had an angiogram in 2009 and had a cardiac arrest so I'm terrified of it happening again. I've just got yo face up to it.

[Drummer20]

I was looked after for seven years when they found out I had valve regurgitation and stenosis.They did yearly echocardiograms and health checks at hospital.It’s a good thing because they monitor how you are doing.I have had a valve replacement now and feel much better.