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 plural 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 plural 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!!
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.
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 .
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.
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.
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