Floppy heart valve - can anyone help?

[Rhutdvhf]

I’ve posted this on the General Health board but it doesn’t get much traffic.

Before Christmas my DM went to the doctors for a chest infection. The chest infection cleared up but the doctor told her it sounded like there was a valve in her heart flapping and sent her for a scan. She said if that was the case then she’d need an operation.

My DM went for the scan on Monday, and the doctor rang her and said that it was floppy and she’d need an operation.

Today she has received a letter from the cardiologist asking her to go to an appointment on 26th March.

Obviously we’re terrified. I can’t eat and feel sick all of the time. The GP only rang my DM rather than seeing her face to face, and said she couldn’t really answer any questions because she wasn’t an expert. It says online that many people don’t need an operation for this condition. Will the GP definitely know she will need one, or could she just be assuming so? It seems so wrong to leave us all scared and confused until 26th March with no real idea what is going on. I’m getting horrific thoughts and struggling to cope.

Hopeful bump.

I cant give any advice on your mum, but i do know hesrt valve surgery tends to be succesful. I have had a floppy heart valve since my twenties and they said I might need an operation as I got older but that hasnt happened yet. I dont know if there are different valves though.

Thank you. Honestly I’m just so annoyed that the GP rang and told her she needs surgery, with no other information, then has left us all hanging until March 28th. I don’t understand why the GP couldn’t have said that she needed to see the cardiologist to discuss treatment so that we weren’t panicking.

I just can’t see how the GP is simultaneously saying she’s not an expert but can presumably can see it’s so severe that she needs an operation, but also no appointment for six weeks?

I'd say try and chill a little, if it was something horrendous they wouldn't be leaving her until a scheduled operation date, they'd want her in now with no waiting.

Thank you. It’s not the condition that I’m worried about - it’s the surgery.

The survival rate for heart surgery in the UK is amazing: about 99%.

It's what the surgeons do every day; what is a once in a lifetime for most patients is a normal day at the office for them.

Try to bear those things in mind and not freak out too much. With any luck your mum will need very routine surgery from experienced experts.

I had heart surgery as a baby and would still be very concerned if I needed it again, but would keep telling myself the above to get through.

My mum was diagnosed with a ‘sticky’ heart valve, I’m not sure if that’s the same condition as your mum. The cardiologist mentioned surgery was one option but didn’t recommend it due to her age and didn’t seem over concerned. As she had AF she was on blood thinners to help prevent clots.
Easy for me to say but I wouldn’t worry too much, your mum will probably be given options at her appointment.

Thank you. What’s really scared me is the GP saying she needs surgery, and I just can’t believe the GP told her over the phone when she was alone, and then said she wasn’t an expert. If she’s not an expert, how does she know my DM needs surgery? Id have thought that would be the cardiologist’s decision.

My son who is 18 has had more heart surgeries than I can count, you'd never know as he cracks back on and bounces straight back. They know what they are doing, she will be in safe hands.

I’m sorry to hear that, thank you for sharing. I hope your son stays well.

@Rhutdvhf thank you

Sorry to hear that OP, I’m not clinical but I work for cardiologists and cardiothoracic surgeons so might be able to shed a little light? We do lots of different types of heart operations so might be able to ease your mind a little bit? The GP really shouldn’t have just out right just said that she needs surgery, the decision is made by the cardiologist/surgeon. Please feel free to DM me

That’s so helpful, I’m very grateful.

It’s helpful to hear that the decision is made by the cardiologist. I wonder why the GP came out with it?

Cardiac surgery is common and successful. I really wouldn’t be worrying. A lot of it is keyhole. So isn’t even open heart surgery. Valve replacements are so run of the mill these days that the GP probably doesn’t see it as a big deal.
its not urgent which is why your appointment isn’t until March. It’s honestly not something to get so stressed about (I work in cardiology)

Honestly just relax, it would be no different hearing the news face to face or over the phone. You're acting like they've told her that she has a week to live!

This actually sounds like the GP was particularly proactive in calling ahead to let her know about the referral coming through. I'm not sure what difference it would made to have it face to face - how would the call go to get her to come in? - Hi this is GP surgery, we need you to come in today to discuss the results of your heart scan... No we can't discuss it over the phone it needs to be face to face... - That would be worse!

Hi OP, not sure if your mum is in this category (apologies if she doesn't) but if my mum got a similar phone call, if the GP said that she "might" need surgery (however small the chances), my mother would invariably assume she "must" have surgery and would report the phone call as such. Even the wording of "you probably won't need surgery" is at risk of being interpreted the opposite. Basically the brain switches straight to the worst possible conclusion / most scary potential outcome and just runs with it as a given.

None of us know what the GP actually said to your mum on the phone - it would have been an odd thing to say "you need surgery" and then refer non-urgently to Cardiology as cardiologists are not surgeons (although some will do technical procedures like coronary stenting), since, as the GP says, the GP is not the expert.

I would suggest to steer away your thinking re surgery altogether - avoid googling/ etc about this until the Cardiologist appointment and go to that with your mum - she will appreciate your support :)

I have a prolapsed heart valve, have had since childhood, now mid 40’s. I’m told I’ll have to have it replaced at some point and in the meantime it’s monitored. It’s quite common and, in the grand scheme of things that can go wrong with you, a dodgy heart valve is not a bad hand to be dealt. The NHS are really good at heart valves, it’s fairly routine.

I have this, its called mitral valve prolapse. Mine is not severe and was found by 'accident' as I have a heart condition. Many people have it and it usually isnt even identified as it rarely causes problems. She has likely had it her whole life but similar to me, found while having a thorough investigation.

I believe they measure it in percentages and mine is quite mild. I have looked into the surgery for future reference and would only have it if i was suffering.

Id get another opinion before the surgery, personally, as unless its causing her daily issues/ affecting quality of life, its usually not harmful unless severe. I have questioned my cardiologist so many times as it caused me anxiety when it was first found.

Hope some of that helps

My dad had 2 leaky valves replaced with artificial (metal) ones. This was about 25 years ago. If it was quiet you could hear the valves clicking as they worked. He never had any issue until he died last year at 90 (unrelated to the valves). While its major surgery, it is fairly commonplace. I know it’s scary but be guided by the cardiology specialists.

i have moderate mitral valve regurgitation and no operation here. I definitely wouldn’t say it is 100% she needs an operation, it really depends on the severity of the defect.

My son had heart surgery. I think we tend to freak out when we hear the words (understandable) but actually the NHS are so good at it that we probably don’t need to… the British Heart Foundation have loads of good info on their website and a helpline

Thank you everyone for your replies, I do appreciate it.

I know you’re right, but I honestly feel like I’ve been told she’s only got a 1 in 50 chance of surviving this, because it says on the NHS that one in 50 people die of a valve replacement operation.

I suffer from anxiety anyway and it centres around loved ones’ health, and I have terrible OCD around the same thing so I’m just really struggling.

I just think if the GP had rang about face to face at least someone could’ve gone with her to actually ask eg. Is this 100% definitely going to require surgery? Should she still be exercising or going on holiday?

Or, as DM says, I wish the GP had simply said ‘the results show a flapping heart valve. The cardiologist will be in touch’. That would’ve been preferable to being told surgery but no idea what the condition is, what surgery it would be etc.

By "floppy valve" do you mean a mitral valve prolapse? I have that. It doesn't cause me any issues, but heart surgery is very commonplace now.

I have something like this, or very similar. It was dx about 10 years ago and I was told the valve would have to be replaced - heart/lung machine during op, very scary.

At first I went for an annual check, ECG and stuff, and then I went on the List - 7 months long then. Then I had an appointment with the actual surgeon who was at a different hospital quite a long way away. He had a look at my pictures, I had another test, and he decided I was OK and that was it!

I now go on to my normal hospital every two years, where they seem to think it's not really getting any worse and the worry is completely gone from me.

Try not to worry too much. Until your mum has been and had those examinations, ECHO etc, they'll not know whether it's mild, or moderate or what. Mine is moderate to severe and I'm fine, will probably still be here in 100 years!