I had Surgery for a mitral valve repair on the 21st June.My Surgeon called me yesterday to see how I was .
During the call he mentioned my heart was enlarged and early heart failure!!
I was shocked and asked him if this was a new thing. He said no. It showed up on a chest xray 2 years ago and also in a chest xray that was done after my surgery.
My Surgeon thought I knew this information. I always asked my consultant if my heart was ok apart from my damaged mitral valve and he always said yes.
My last echo was in March and he told me my valve had narrowed more and it was Surgery time. I again asked him was my heart ok apart from the Mitral stenosis and regurgitation ? He said yes !Yet again he never mentioned my heart had enlarged or that I had early heart failure. 2 years ago it was first discovered but He didn't tell me. Why would he withhold this information from me? Surely he must have known my Surgeon would tell me .
I'm fuming that he kept this information from me.
I'm not quite sure how to approach this with my consultant without losing it with him.
Any advice would be hugely appreciated.
Kiki
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Kiki54
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It's difficult to advise without knowing in what context your surgeon referred to your enlarged heart & early HF.
Quite often an enlarged heart can revert to normal if the reason it's become enlarged is repairable, such as valve repair, maybe that's why your consultant hasn't mentioned it, he may not have seen it as a major problem 🤷♀️ . I'm a bit confused, is your surgeon saying your enlarged heart was showing on an earlier x-ray or your HF was showing & what does he mean by early HF? HF is diagnosed by specific tests, have you had an echo or MRI at all?
Those are the questions I would be asking your consultant, but mainly I would want to know if your enlarged heart will recover now the valve has been repaired & therefore you're no longer at risk of developing HF.
Maybe contact the BHF nurses on this site to talk through your concerns & they'll advise you on what to ask your consultant
It’s your health and access to your records must be provided on request, GDPR rules apply. I had an issue vision related and insisted I received a copy of my report about the findings of the scan the specialist team carried out. It arrived within 48 hours and just as well as my local hospital had “lost” the report. To be candid the NHS team will not be pleased with your insistence but it’s your health and they will get over it. Sorry to be blunt but some NHS teams are absolutely fabulous in sharing information and findings etc others less so. Easy for me to say this and I know it’s a different conversation to have, best of luck with whatever you decided ( I was lead business consultant for a period of time working in this area )
Hi Lezzers, Yes A chest xray from 2 years ago showed my heart had enlarged as well as early HF. This was never told to me.
I get 6mthly echo's and have directly asked my consultant how my heart is? Any enlargement or damage other than my Mitral valve. He has always said no other issues. This clearly is not the case.
I had an xray after my surgery which showed the same issues with enlargement and Early HF.
I only found this out yesterday when my Surgeon called to see how I was recovering.
The valve repair is only a temp measure to alleviate my symptoms. I will be getting the mitral valve replaced.
I really hope you get to the bottom of why you haven't been told. The only thing I'm confused with is your surgeon saying the x-ray shows early stage HF as my understanding is HF cannot be seen on an X-ray, this can only be established by echo or MRI which shows how your heart is functioning. Is the surgeon basing the HF diagnosis on your heart being enlarged. I would be really interested in hearing what you cardiologist has to say about it.
I totally get your anger. Deep breaths, write down all the questions, give yourself a day or 2 before setting to, that has the added advantage of giving you time to think of questions, etc!
I hope you don't have to wait too long for your next op.
Ps: I thought you might be interested to know of something similar that happened to my husband.
Our last gp used to send my husband for a chest x-ray every year because he had some coughing issues & because he'd worked with asbestos many years ago. The GP always said the x-rays were clear.
We moved counties, and again because of the cough our new GP sent my husband for the usual x-ray! My husband phoned to get results from the surgery and was told the Dr will phone him!! Instead the Dr sent a text message saying the x-ray showed pleural plaque due to asbestos exposure, that he should have had an urgent appt with a lung specialist but it had been missed and that he would chase it up!! Totally threw us into a panic! Especially as my husband had just completed cancer treatment!!
Husband had the urgent appt with the lung specialist who was a bit surprised to see him & couldn't understand why the appt had been arranged!! Apparently, this pleural placque had been there for years, in all those years it hadn't got any worse and was definitely not the cause of my husbands cough! AND, 40 years after exposure you're no longer considered at risk of asbestosis & as my husband was nearly at the 40 years mark he had absolutely nothing to worry about!! No one had ever told him before about this plaque!!
But a lot of stress & worry was caused purely because the new GP didn't bother to look through my husband's medical records &, to make matters worse, thought it was acceptable to send this stuff by text message! I complained to the practice manager!!
They told me it was to alleviate my symptoms. I did ask why I wasn't going straight for valve replacement instead. I was told its because I've said I don't want a metal valve and to go on Warfarin.
I've asked for a tissue valve and because I'm only 55 if they replaced it now ? I would need it replaced again in 10- 15 years.
They told me the repair can last for approx 5 years. Obviously I will still be monitored with Echo's and seeing my Consultant. If my valve starts to narrow again then my Valve replacement will be done.
My consultant and Surgeon agreed it was best to take the tissue valve and avoid Warfarin. I know everyone is different on Warfarin but it seems my team are not fans of it.
how about writing an email or letter to your consultant where you can say what you want to say without “losing it” but getting across what has happened, how you feel and what you want answers to / explanations, ending with a request to meet or at least they contact you to discuss?
I found especially at work if your really riled up, if you write an email by the time you’ve finished the “uncut” version and calmed a little you can edit it to be clear about what you are communicating and what you are asking for.
May take the actual emotion out the communication to make it more effective - but that’s not to say your feelings and reaction are not warranted, anyone would lose it!
I have a rarer heart condition and have had to write to my Cardiologist to raise issues about my care when I am admitted to hospital.
I write my email, then leave it 24 hours or so before I re read it, edit if necessary to take out the heat of emotion I may have included in the email, then I press send.
I have found by taking the emotion out of the email as Fanfab1 has suggested helps.
I have great responses from my Cardiologist, who supports me in a number of ways including coming to see me on the ward.
If you receive an unsatisfactory or no response then I suggest you contact the Patient Advisory Liaison Service PALS of the hospital, outlining your concerns.
Good advice I do this myself write exactly how I feel then leave it in the draft folder till next day it's surprising how often I'm surprised by the "heat"of my words and change them .
I had something similar in a way like this with my consultant at the time
Before my Bypass I had to have lots of tests done and asked every time had they come back fine to which I was told yes
A year after she phoned me and said it is time we book you in to have a x ray on the nodule we found on your lung when you had the tests done before your op
I was so alarmed and said what nodule you never told me that I asked after every test was everything ok and you said all tests were fine now you are telling me this ?
I was very angry and very upset and to be honest she lost my trust and I asked my Doctor if follow ups with her were still needed and because this is slightly different to you luckily there were not but I know how news you were not informed of leaves you feeling and yes I did lose it with her so I understand you feel you could and need to find a way not to
I think maybe emailing might be the best way to open up the questions you need answering to start with and also when they say HF it could be that having your new valve will make a difference
Giving us the full facts is very important to us even if they feel it is not especially when we are always asking them about our condition and the damage it causes and stress when all of a sudden they decide to mention something we were unaware of for me was unacceptable
Hopefully when you do get an explanation how it sounds at the moment the answers will be positive you are given
First off apologies for a long post but I wanted to give some background to my own situation part of which may explain some of what has been said to you.
I had a HA in mid May 23 at the age of 70, echo the same day and 2 stents 5 days later. 3 days after that a further echo and told I needed AVR and CABG. So, as you can work out, I'm just over a year post surgery (I celebrated my tissue valves birthday last month!).
At the same time I was told I needed AVR I was also told I had an enlarged heart, apparently it was twice its normal size. This is usual in HF as the heart has to work a lot harder to keep you alive when it is inefficient (which is a result of valve problems). There is also a tendency to retain fluid which puts additional strain on the cardiovascular system. Mitral stenosis and regurgitation will be classified as heart failure, my issue was aortic valve regurgitation. Both forms of regurgitation reduce the blood supply to the body, and therefore the heart as well making matters worse.
After my AVR my heart has returned to normal size and I was told by my surgeon at 7 weeks post op at his clinic (which is when a post op echo and x-ray was done) that I can live a completely normal life which is what I am doing. I now run, swim and go to the gym as much, if not more, than before my HA. I'm just coming to grips with lifting large weights, I'm up to 19kg single handed. That is purely a mental issue getting my head round what has gone on.
Despite the local cardiac unit at hospital not wanting to see me for two years and my surgeon saying I'm fixed (his words were 'it's only a bit of plumbing work') I am still classified by my GP practice as having heart failure and have attended their heart failure clinic occasionally. It is a 'tag' that, once received, you can never get rid of as far as I am led to believe. My mother had a triple bypass, was therefore classed as having heart failure but, when she died, her cause of death was extreme old age at just shy of 100, over 30 years after her surgery.
I believe, rather than deliberately withholding the information, what appears to have happened is that some of the detail has been overlooked or not properly explained to you.
Thanks for your reply Survivor. My mitral valve was damaged by Rheumatic fever as a child apparently. I started getting symptoms 8 years ago. I get 6 mthly echo's and see my consultant twice a year also. So basically checked every 3 months.
I ask my consultant each time I see him if there is any changes to my heart. He said no , just my mitral valve. I even asked if my heart had enlarged? Again he said no. ( This was said at my last echo in April)
To find out that a chest xray 2 years ago showed my heart had enlarged and I had early Heart Failure implies to me he has with held this information for whatever reason. I wasn't told any of this until my Surgeon called yesterday to see how I was recovering. I had an xray after my Surgery which again showed my enlarged heart and early heart failure. This has never been told to me despite me asking my consultant directly.
The surgeon thought I knew. If he had not mentioned it to me yesterday? I would be none the wiser.
I ask lots of direct questions whenever I see my consultant who I actually get on well with. To find out that he has actually lied to me regarding the enlarged heart and early Heart Failure has thrown me.
I'm going to be calling my G.P tomorrow to ask for a copy of the xray reports.
Ah, that's the usual cause of mitral valve damage apparently. I would have expected 'heart failure' to have been explained when first diagnosed.
It's taken me quite a while to get used to the term heart failure and even longer to admit to a heart attack especially after being told I'm fixed. As such I think I 'shut out' the expressions mentally.
I still don't think he has deliberately lied to you.
When my damaged valve was first found 8 years. My symptoms were mild . Xrays I had were clear and my heart wasn't enlarged.
So to find out that it showed 2 years ago and despite me asking how my heart was etc. He said nothing about what the xray showed. He even told me in April that my heart wasn't enlarged or that I had early HF. So obviously in my eyes he withheld the true details from me.
I'm not scared of the findings . I know it's not a death sentence. I'm angry that I wasn't told .
Kiki
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Whilst I would certainly take the matter up with your consultant, I'd also ask questions of the surgeon.
As you've been having regular echos, an Enlarged Heart/HF would have shown up quite clearly, so it does seem odd, but, I'd be very surprised if the surgeon hadn't reviewed the most recent echo prior to the surgery. It begs the question why they only picked it up in a post op XRay.
My understanding is that diagnosis of HF by an XRay is limited, in my case it was picked up by an eagle eyed doctor in A&E from an XRay. She noticed the difference from a previous XRay a few months earlier where it looked like I had a build-up of fluid in my chest. It was then confirmed by a CT Scan and an Echo that I had HF.
Hi Heedio, It wasn't the post op xray that picked it up . It was a chest xray that first picked it up 2 years ago. I've been having 6 monthly Echo's and 6 mthly appointments with my Consultant for the past 8 years so it also would have shown on any echo's but despite me asking specific questions ? My consultant said no enlargement or HF. This obviously isnt accurate if a chest Xray picked it up 2 years ago.I was never told until the Surgeon called on Saturday to see how I was recovering.The Surgeon did see my recent echo before Surgery. He thought I knew about my heart being enlarged and the early heart failure.
I'm calm now . I'm just perplexed why I've never been told.
Hi Kiki, I think I was probably guilty of making a couple of assumptions in my original reply. Anyway, its good that you've calmed down and contacted your Consultants secretary. Hopefully, you'll get some answers to your questions that aleviate your concerns. Keep at it with the questions, both consultant and surgical teams.
Interesting that they've given you 5 years on the valve repair, which if I'm reading it right, is to get you to a more suitable age for the tissue valve long term. It's not something I've heard of before but it seems to make sense if the intention is to better time later ops given your preference for tissue.
For what it's worth my first replacement Aortic Valve was tissue and lasted just short of 19 years. Best decision I made, although I'm now with two mech valves, but, thats another story dictated by circumstances at the time.
Like you, I would like to know my test results. I find it painful when some doctors decide what information would be useful for the patient to know as not to upset them unnecessarily. I find that extremely patronising. I’m more than able to handle what you tell me.
Get access to all your previous echos and send an e mail as people here suggested. Sometime a rational an open discussion with your consultant is a good idea.
So sorry this has come as a shock. The fact you have all these underlying conditions would suggest you had an enlarged heart. Your consultant may not have taken on board that you were unaware and needed this explained to you. Sorry they overlooked this detail when caring for you. I would mention you were not aware at your next appointment and express your dismay. I feel your consultant didn’t realise you didn’t know.
Good luck with the conversation, I hope you are recovering well.
An echo is a much better and more detailed test for assessing the heart's true size and function than an x ray is. It's quite likely that the x ray "suggested " an enlarged heart, but when it was measured more accurately on the echo it wasn't really enlarged, so therefore your consultant didn't mention the x ray because that would be giving out inaccurate information. Also, heart failure is known as a clinical diagnosis, that means it depends on your symptoms, not on the images seen in a test (although echo can give a good estimate of the overall pumping function). For example, one person may have bad heart failure symptoms even when their heart is pumping at 55%, but another person's heart may only be pumping at 45% and they don't have as many symptoms, so their heart failure would be classed as less severe. So again, an x ray alone wouldn't diagnose heart failure, its only able to give a small clue or one small piece of the overall puzzle, which needs to be looked at with all the other tests and your symptoms to get a diagnosis. I hope this helps to explain why the x rays weren't mentioned - they were likely superceded by the other, more accurate echos and also by talking to you about your symptoms.
Hi Gnus I thought that but I realised she had surgery so they might have saw her heart was failing then, but he didn’t give her any explanation just dropped the bomb and went. An Xray showed my enlarged heart, an echocardiogram showed heart failure like you said and an angiogram confirmed it was caused by dilated cardiomyopathy and atrial tachycardia. Sometimes too much information just stresses you more unless there’s an explanation to it.
Hi Gnus, I get 6 monthly echo's and see my consultant every 6 mths too. The enlarged heart and early HF would have also shown on the echo's. I would always ask him if my heart had enlarged. My consultant said no, even after my last Echo in April. He said No ?
This is my issue. Why he kept telling me No when clearly that wasn't the case.
Hi Kiki,I completely understand why you would feel this way and bee annoyed not to be told the results at the time.
What I think is that the echos may not have shown an enlarged heart (sometimes tests can disagree with each other) - the x ray is based on only one picture from one angle, looking at a silhouette of the heart, while the echo is based on around 70 images and videos and looks inside the heart Chambers and measures the thickness of the muscle and then calculates whether its enlarged or not based on your age, height, weight etc...so maybe the x ray said enlarged but the echos didn't? And that's why it was not mentioned to you?
I would definitely ask to see the actual echo reports as hopefully that will help clear it up
I've just spoke to my Consultant's Secretary and asked for clarification on what the echo's have shown. She also has both xray reports which I've asked for copies to be posted out.
Hi I think you should speak to the BHF nurses who might be able to explain more to you and advise you more.
I had the same situation as you, but it wasn’t to do with my heart failure. I noticed pulmonary hypertension on my notes after I had an echocardiogram and it was severe, but when I saw the heart failure doctor he never mentioned it. I looked back on my notes years ago and it was there right through but very mild. When I saw him next I asked him about it. He seemed not too bothered and said it’s just a progression of your illness, but by then I had sent off for information about it and spoke to the BHF nurse. Now I notice it’s listed as part of my illnesses. I was diagnosed 21 yrs ago with an enlarged heart and mild heart failure
I’m not sure if they don’t want to alarm us with certain information, because they’re use to it occurring with certain illnesses or if they forget to mention it because of the man thing causing the problem, if they try and fix that problem then the heart will go back to normal, if this makes sense. When I found out i obsessed about it for a while, googling, reading all different outcomes that might happen.
Just try and calmly mention it when you next see them, and tell them how you felt when you found out, the emotions. Take someone with you if you can for support.
I had a similar situation…open heart surgery to repair two heart valves and found out six months later that I had a slightly enlarged heart and HF. It was a hell of a shock.
Pre op I was admitted as an emergency and while on the ward I had an ‘episode’….I blacked out and came round in a room packed with people, bright lights, pads on chest, feeling dreadful, extremely weak. A nurse was stroking my forehead and I asked her if my heart had stopped, she said ‘no, it went into a dangerous rhythm but you’re ok now’. During my recovery I found out from my GP and subsequent docs, specialists etc that I’d had a cardiac arrest. That too was a hell of a shock. I still don’t quite believe it. I was in hospital for 3 weeks after the episode and no one told me. What actually happened? Are my notes correct? Was the nurse wrong?
I’m kind of over it now, and I’m fit and well, but I do recognise the upset caused by not being told the full facts. My care from a range of specialists throughout was superb , except for one nagging feeling….at no point has anyone ever sat down with me and my notes and explained the full picture.
Hi Wilding,I totally understand where you're coming from.
I can't fault my care. The whole team were amazing.
I learnt more about my heart issues from one of Dr's in my Cardio team in hospital than my consultant has ever told me despite me asking very specific questions.
Your experience certainly sounds unusual! It beggars belief that you weren't informed at the time you had a CA.
I'm very glad you're on the mend and recovering well.
I would be absolutely furious, like you, if I had asked the right questions but not been given the true answers. However, think firstly about yourself, being angry doesn't do our bodies any good. Get the anger out. Writing on here, writing an email that you initially don't send as others have suggested or telling all your friends till you are sick of hearing yourself talk about it, all help in my opinion.As someone with exactly the same issue and cause as you, I would first want to know if my heart will go back to normal, as I am sure you do. I would also like to know more about the heart failure issue as I thought surgery fixed it. And yes, I would want to know why I hadn't been given the full picture in the first place! Wishing you all the best x
Hi Superfluff, I'm calm now. I had a good rant to a friend and I'm waiting on my G.P calling me.
All I want is honest answers to my questions and why I wasn't told.
My friend was actually with me at one of my appointments with my Consultant and remembers me asking if my heart had enlarged and my Consultant saying no.
I have not read all the previous responses, so forgive me if this repeats what others have said
I am sorry to hear that you feel annoyed that information has been witheld. It feels like a betrayal when we find out about such omissions.
but there are many reasons for a doctor not sharing every detail from health records
one may be that an issue is very mild and is below a level which is seen as needing monitoring or treating, particularly if there is another issue which needs attention more urgently
also if the mild issue does not affect the urgent one it might not be mentioned
doctors sometimes select the information they will share because they are aware that there is a limit to how much a person can take in during a short meeting - the time allowed does not give any of us the space we need to take in several issues, understand the implications of them all and any treatment options as well as having our questions answered - so they focus on the most important issue
doctors know that you have a right to be informed and that you can request your records, but they also apply their judgement to how and when they share it
your GP will also have access to your information and should be able to discuss it with you if you have concerns about what tha cardiologist did not share
hi Kiki, if you had known about your heart being enlarged earlier than you did would you not have had 2 years of worrying? I’m not saying this was kept from you. However I could understand if it wasn’t specifically stated because although generally medical staff take time to state risks and benefits of treatments, if it is something that is not reversible, as I believe an enlarged heart isn’t, I suppose their focus was on helping you with medical/surgical interventions at the optimum time for your health. I can understand this must have been a shock to know that your heart is enlarged. There is treatment for heart failure which may be medications. Hopefully your heart condition will be kept under control by your doctors. It isn’t easy to know how much an individual wants to know. Some people cope well with knowing the worst scenarios whilst others would crumble. I wish you well with your heart health.
Thanks for the reply, Fministry.I'm one of those people who want to know everything about any health issues I have.
That's the reason I repeatedly ask direct questions.
I'm not a worrier when it comes to health issues. I like to be fully informed, educated and my Consultant knows this.
I had 2 Cancers at the same time in 2019. Womb and Breast Cancer. Every single part of my Surgeries, treatment ,possible complications and Radiotherapy were explained in great detail with honest answers.
Hi Kiki you have certainly had quite a lot to deal with and I would want to know best and worst scenarios like you. Many people are different - thimbles and buckets and you are a bucket in that you can cope with a bucketload of information. All the very best.
You have the right to take an advocate with you to appointments, they may ask questions on your behalf. I’ve acted as such for a friend in the past as I’m a qualified Complementary Therapist with anat & physiology plus.
I take my husband as he’s used to interacting with difficult people in business.
You indeed have the right to see all your medical records.
Shocking! Maybe he thought he had told you indirectly, maybe he did not want to shock you too much at the time? Either way you know about it now! You are a stronger person now and can deal with it better than you would have, had you known before!
It will be intersting to see what he says to you in your next meeting. You could ask him (at the end) why he did not tell you before.
I think it is worth remembering that the term 'heart failure' can sound a drammatic term, whereas in actual fact it is just generally used for enlarged chambers of the heart/ thickened tissue. Alot of folks live with this and live a long good life, especially if the enlargement does not continue due to measures like surgery you had Kiki54. And yes the chambers can even revert back in size once the strain on the heart is resolved. (As in the case of Michael Palin). My consultant has told me the chambers are enlarged but not used the term 'early heart failure'. And, what some deem as 'unhealthy' others may not. I would be gentle on your consultant and yet do ask him about this difference of opinion. Also to add, I had bad reaction when on warfarin and so am taking a different anticoagulant. Plus the metal valve clicks which would not be my preference. I had a valve repair which is now needing more surgery, but I would prefer a tissue valve.
If you asked 100 recipients of a mechanical mitral valve I would bet less than ten would hear "clicks". Strangely, those that do find it re-assuring. Also, there is no other anti-coagulant for mechanical valves other than warfarin I am genuinely curious to know what reaction you had to it if you wouldn't mind sharing it.
I appear to be in the same boat. After having chest infection and about 3 lots of antibiotics between Nov 23 and Jan this year I was eventually sent for an X Ray in May. I always ask for copies of tests etc and as I had heard nothing phoned up the surgery and was rather surprised with the results I received.
Nothing unexpected it said. Comparison study with X Ray from April 23. Gross Cardiomegaly with a CTR of 0.68. Looked it up and it's an enlarged heart. So either it did not show up on '23s X Ray or it did and was missed! If it wasn't missed then why wasn't I told?
It was only when I queried these results that I got to see a Dr. In the first instance I was given an appt. with a Nurse Practicioner, who after hearing why I needed this decided that my query was above her pay grade and I really needed to see a Dr.
So after a further appt, a week later, I have now had my bisoprolol increased to 12.5 mg, had to take BP readings for 10 days and have just had a blood test. I think that depending on the bloods I will be having an ECG or something similar. I now await the results.
I wonder how long it would have been before I was told about it if I hadn't asked for the results. Possibly never, the way things vanish into 'black holes' these days.
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