Before Christmas my mother 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. She 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 mother 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.
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I don’t know much about this at all, but there are some good booklets on the BHF website - I think those on heart valve disease would be the ones that you need.
I’m assuming that you and your mum are based in the UK? One good thing is that the NHS is still excellent in an emergency. Despite delays, if the doctors are really worried then you would be talking hours and not weeks.
So, I would take the wait as a sign that they are not so worried as to make the appointment very soon.
I’ve looked through all the online leaflets etc and everything says that most people won’t need surgery, but the GP has now told my mother twice that she’ll need it, firstly when she first listened to her chest and said if she had a floppy valve then she’d need it, and then again when she got the results.
But if surgery is only needed for severe cases then surely it’s severe enough to need to have a first appointment with the cardiologist before the end of March? I’m so confused.
Hi. I was diagnosed with 'Floppy Diseased Valves - Aortic and Mitral' years ago. Was then put on Medication with Yearly Check-Ups with a Cardiologist. It started off as Mild, then transpired to Moderate and then Severe. I have now had a Double Bypass with Mechanical Valves and have never felt so well! Your Mum's Cardiologist will/should explain everything to her. Also, it is more common than People think so try not to worry too much. Best of Luck 🤞
Thank you for replying. My mother has no symptoms other than feeling out of breath if she walks up steep hills. I just don’t understand how the doctor knows that there will definitely be surgery at this stage.
I keep making myself meals and then being unable to eat. I just wish we had more information or alternatively that the GP had just said that there was a floppy valve but she’d have to speak to the cardiologist instead of repeating about the surgery.
I think what might have happened is that your Mum's Doctor has possibly heard a Murmur. That's what happened with me anyway. There are a few different types. Mine was described as a 'Musical Murmur' and my Valves were diseased after having Rheumatic Fever as a Teenager! I found that out from the Consultant. I was told that one day they would have to Operate (My Family were worried sick), more than me lol 😂! Maybe the Doctor just meant that it would come to the Stage of Surgery or they might just want to 'nip it in the bud' so to speak owing to what Valve/s are affected. I am not Medically Qualified just thinking about my own experience, so if you are really worried, have a think about phoning a BHF Nurse in the meantime to put it into perspective a little bit until you get to see the Cardiologist! I was told not to lift anything heavy and avoid Stress, pretty hard at times though I know, and to take what Tablets they gave me. Try not to worry too much though but I definitely understand where you are coming from. Good Luck 🤞
I had stenosis of my bicuspid aortic valve. Stenosis is medic speak for a blockage. When this became serious, the nhs moved very fast indeed. I got a phone call the next day and an appointment with the surgeon in no time at all.
I had the valve replaced which is an amazing operation.
The health services were under maximum difficulty as covid was raging, but they dealt with me very well indeed.
Your GP hands over your case to a cardiologist because the latter are experts, GP is not. Your GP did well to spot the possible problem.
Mother now deals with the cardiac team on this matter.
Aw you must be so worried. Honestly had never heard of this condition before I'd heard of them leaking but not flopping. Does she have to wait till March to speak with cardiologist or have you been told by them your mum needs surgery? Wishing your mum all the best and hope it doesn't require surgery. ❤️
When she went about a chest infection the GP said ‘it sounds like a valve might be flapping. It might just be the chest infection but I’ll send you for a scan. If it is that then you’ll need an operation’. I looked it up online and it said most people don’t need treatment and are monitored.
Then she rang after the scan and said it was a flapping valve and that she’d need an operation. This was over the phone while my mother was on a walk around the park, and obviously she was in shock and couldn’t take it in. The GP said she was better asking the cardiologist any questions she had because the GP wasn’t an expert. Then a few days later my mother received a letter to say she had an appointment with the cardiologist on the 28th March.
Aw she must have an appointment with cardiologist to discuss her valve probably have an echo and ecg done and discuss surgery. It's good how quick the GP did a referral to a cardiologist. Hope your mum's appointment goes well keep us updated.
And also the the severity of the floppy valve it maybe that the cardiologist can manage with medication first and continuing monitoring every 6 months to a year but obviously wait to see what the cardiologist says.
Hello there, what great support your mum has in you & that you are keen to involve yourself in research & find out as much as you can. This is really commendable.
You’ll see from this lovely community how even the most fearful events once dealt with by the specialist teams come good & people’s lives continue (albeit with adjustments).
Contacting the BHF nurses is a great first step into the world of cardiology. The consultant who assess your lovely mum will be the ONLY person who can decide the course of action required.
Anybody else will be guessing….& that won’t help you.
Try to find some calm as your mum may pick up on your emotion & become unnecessarily stressed (not good for anyone).
Maybe write down some of your questions. This journaling helps in 3 ways…it get worry & fear out on paper instead of it rattling around on a loop in your mind.
It also means you won’t forget to ask them & finally you can refer to the answers regularly once you know the full details of the plan for mum going forwards.
I hope our thoughts & suggestions have helped already.
Do keep in touch with the community on here & best wishes to your mum 🙂
I know when you are worried any length of time seems an age and you want answers and solutions immediately.
However, you have an appointment to see an expert and it is only a few weeks away.
Your mother isn’t in poor health now and is unlikely to get worse at all in that short time. I think her GP has been great to flag up a potential problem and get it escalated to a specialist quickly.
The appointment should give an idea of what the condition actually means, what treatment is needed and when that might be. Maybe it is something they will monitor over time or maybe it is something that would benefit from early intervention. But knowledge is power, your mother can live better and longer because this has been picked up now and can receive expert treatment before it could cause her problems .
Get a notebook and start jotting down the questions you would like answered by the cardiologist.
Don’t let worry/fear make you ill as that really won’t help your mother and will no doubt transfer more anxiety to her. Cardiologists have dealt with similar situations over and over, they are trained for exactly that.
Try to feel reassured and glad that you are going to get the best advice and help very soon.
I understand you must be worried but wait until you’ve seen the Cardiologist. If he thinks your mother needs surgery she will be referred to a cardiac surgeon who will make the final decision.
Even if she does need surgery it is scary for the patient (I know, I’ve been there) but is bread and butter to the surgical team. She will be very well looked after and will probably feel heaps better afterwards.
I had severe mitral and tricuspid regurgitation...long story but when I had ultra sound scan they told me that the regurgitation was because my valves were floppy. Please don't panic about your Mum.....I personally had open heart surgery but there are alternative less invasive procedures available so if your mum needed surgery these would be discussed. People go into immediate panic about the heart...I did and I know that many others did on this forum when diagnosed. The technology, knowledge, medication and care with the heart now is so advanced and people are able to lead normal lives because of this. I would make sure you go with your mum to appointments so that you fully understand the situation and what they are prepared to do about it and ask questions. . There is so much help and advice available...BHF being excellent Please don't Google...only use recommended sites... BHF,, NHS etc. I don't know how old your Mum is....I was 67 when I had my op but I do know there are many people on here who were much older when they were diagnosed and had surgery and who have made excellent recoveries. Don't go into meltdown about things you don't know about yet....our minds and imaginations are wonderful at doing this and over thinking plus lack of knowledge yet will make everything seem bigger and worse than it is.
I'm sure all will be ok but you can get lots of reassurance, advice and support from people on this forum. Hope it's all sorted soon for your Mum. All the best x
I am 71 years old.I was told way back in August that I had a severe leak on my mitral valve and needed an operation and it would be within weeks not months. Unfortunately the waiting lists for the various tests have been horrendous but I finally had a pre-op assessment two weeks ago only to receive an apology and be told the waiting list from this stage is two to three months.I have great faith in the doctors but the NHS service is not good unless you are an emergency. Tell your mother to stay calm as this is all you can do if you cannot go privately.
I was told I had a “floppy” valve after my GP heard a noisy murmur and sent me for a scan. My GP then referred me to a cardiologist who wanted to do his own scan. That confirmed I had a mitral valve prolapse with severe regurgitation. I had no symptoms and the cardiologist said I would eventually need an operation but could carry on going to the gym 5 times a week , which I did. I was monitored for a couple of years and had a more detailed scan, and then a stress test. The results for these were referred to a surgeon for an opinion to decide whether an operation was necessary. He decided it was and I had a repair done by minimally invasive surgery about 15 months ago. Back to normal very quickly after. If your mum hasn’t any symptoms, then I wouldn’t worry at all. The end of March isn’t far away, and in all probability it won’t result in immediate action. If the cardiologist was concerned, they would ask for a more urgent appointment. A GP is what it says - general- ie not an expert in anything. It’s true an operation is likely at some point, but it could be years away.
I had a similar experience to Paperlover, that was told I would eventually have to have surgery but could be some years. Your mother's GP has clearly heard something but they need the expert cardiologist to make a full diagnosis. Try not to worry, at least they are proceeding quickly with the consultation and proper diagnosis, only then will you know if and when surgery is required.
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