My husband had a Mitral and Tricuspid Valve repair in June 2020, however his AF could not be treated as it had been happening for too long (they discovered the valve problems because AF was found on an ECG some 18 months prior to the operation).
He has been struggling with his breathing for some months now, getting progressively worse, initially put down to his asthma, chest infection or sinus problems.
A recent blood test by the GP resulted in a phone call the next day which mentioned Heart Failure and he was told he would be referred to a cardiologist. The surgery text him yesterday to confirm they have received a letter from the Cardiology department to acknowledge they will be in touch. We don’t know how long and my husband is reluctant to ask but we are both worried.
Can a blood test prove Heart Failure and what will happen next? I want to reassure him but it’s very difficult and he is so frightened and worried that it might mean open heart surgery again. Thank you.
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Doodlebug63
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Hello I can't give you a expert opinion only one based on experience.
The waiting is awful.
If it is heart failure then I would doubt he would be having open heart surgery, as the heart itself can't be repaired, (the scientists are working on it but it is years away).
That being said that doesn't mean the worse news possible,
When I was told I was in a hospital bed and I can honestly say I thought I had days left and wanted to be discharged to die at home. One of the nurses was brilliant in giving me support.
16 months later I am still here, do the gardening, been on holiday get out and about etc and thankful every day for what the medics did. I do get tired quicker though.
His in good hands he will get medication that will help the heart to cope and adjust, that with lifestyle changes, managing fluids eating well etc should mean that he is able to get to do most things that you might not thought were possible (that was my experience anyway).
He might end up with a pacemaker but I don't think this is open heart surgery.
thank you for your reply and I’m glad to hear you are doing well. Today we received a letter for a chest x-Ray so it would seem at least we are moving along. Fingers crossed we get more info soon so we are better informed as to what we are looking at. Thank you.
I’m sorry to hear about your husband and understand how concerned and scared you must both be. My mum was hospitalised with heart failure following undiagnosed AF that had been going on for years apparently. Mum was very breathless and couldn’t lie down at night due to that ( she only told me this afterwards🙄!) There is nothing they can do surgically, I understand but they put her on medication and within a week she was back to buzzing around. It was quite a transformation!, 10 years on, at 87, she’s still going strong and keeping me in order😊
I don’t in any way, want to make light of your husband’s concerns but just wanted to say that, even if he is diagnosed with heart failure ( a really terrible term I think) with the right medication he will notice an improvement.
All the best to you both, TC
Btw Mum was nearly ‘got’ by a doodlebug during the war! Fortunately, the engine sputtered but then it restarted briefly before cutting out and crashing into a house a couple of streets away!
thank you so much for taking the time to ease my worries. All these lovely replies have certainty eased my mind.
I’m glad to hear about your Mum’s transformation on meds. She sounds like my 87 year old Mum; they were made of strong stuff, I have to remind my Mum of her age when she decides to climb ladders 🤦♀️ and such like!
Hi, I am also the wife of a HA survivor now living with heart failure. First of all don't google, the results are terrifying and NOT accurate. Secondly the term heart failure is also misleading, in Spain for example, they call it heart insufficiencies, because it just means that the heart is not working at optimum capacity. I also want to say to YOU, its not easy being the partner of a sufferer, we too worry and fret. So take some time for yourself, go to appointments with your hubby so you can ask questions and hopefully help put your mind at rest a little. For me, it took about 3 months after diagnosis before the intense worry began to subside, but is will get easier. Please remember you are not alone, this is a great forum with very friendly people always willing to listen and help.
thank you so much for your kind words. I will definitely be attending appointments with him! I think I’m quickly learning from all the kind replies that it’s not as bad as we both first thought and there is definitely something that can be done.
You are very correct in saying this forum is wonderful I used it before while he was awaiting open heart surgery and just been able to share my thoughts was and is a great help.
Heart failure is such a negative term. Conjures up all sorts of days to live scenarios. I recently had mitral valve repair and was also told I had heart failure. What they really mean is you have compromised heart function, but with the right combination of meds will still have a full and healthy life. I'm now 3 months post op and feeling better by the day. I'm walking a couple of miles a day and generally feeling pretty good as I refuse to accept that heart failure means life is over
Thank you for your positive outlook, which I’m trying to impart to my husband. I’ve read him the general consensus of the replies and hopefully this will ease his (mine are) worries until we get more information.
Good to hear you are continuing to make good improvement, my husband made a wonderful recovery after his op, I’m sure with your outlook you will do the same.
I think the blood test could have been to measure levels of BNP or NT-proBNP in his blood. It’s useful for diagnosing heart failure and is quite reliable. Heart failure is an awful term though and should be called heart inefficiency instead. I had a mitral valve replacement and tricuspid repair in January but due to endocarditis I was left with moderate heart failure. I’m now on entresto and Dapagliflozin which are considered wonder drugs and I’ve been told that if they work I could be out of hf in a few months. That doesn’t mean I’m cured but it will mean that my heart is doing well enough to pump enough oxygenated blood around my body again with the help of meds. I’ll be on these meds for life but it’s a small price to pay for having quality of life. I’m 51 and when I was told that I had heart failure, after consulting Dr Google, I honestly believed I had less than 5 years to live. Now I’m being told that if the meds work I could have a normal life expectancy, whatever that means. I’ve been going to the heart failure clinic but have my last appointment with them this week as I’m stable and on all the appropriate meds. They have been amazing in giving me reassurance and hope. Sometimes we just need to hear positive messages from health professionals to counter the fear that we all feel after heart problems. Hopefully your husband will feel more reassured after he sees the cardiologist and has everything explained to him. I hope that you are ok too as it must be hugely stressful caring for him. My husband has been amazing looking after me but it’s certainly taken a toll on him. You need to be looking after yourself too. X
thank you so much for your reply, it has given a much clearer understanding and much hope! He did extremely well after his valve operation so, having read your reply, I’m much more hopeful now that it isn’t the death sentence that initially springs to mind.
It is stressful as you worry but try not to show it to them. You also have to learn tactfulness to degree level 😂 for fear of not looking caring or imposing your worries onto them too. Since receiving the news from his doctor he has taken to hardly moving off the couch, which I’ve tried to explain isn’t the best thing; he still needs to move about but sensibly and understanding his limits. To top it all I’ve recently been diagnosed with late onset asthma and high blood pressure after being admitted to hospital for 3 days because of breathing difficulties. I’ve got lots of appointments regarding that issue, which came as a complete shock as I’ve always been the fit one on no meds etc so I’m still trying to get my head around it!
Wishing you well and thank you again for taking the time to reply and ease some worry.
hi. I’m really sorry to hear about your asthma and high blood pressure, I hope that you are taking care of yourself and managing to get plenty of rest. At the moment I imagine that your husband is feeling a bit shell shocked by his diagnosis but hopefully, in time, he will be able to get his head around it. There’s no reason to think that he can’t have a long and full life as long as he takes his medication and looks after his health. Perhaps he could consider asking his GP for a referral to a counseller or he could self refer to talking therapies. It isn’t for everyone but he won’t know unless he tries. I really hope that things work out well for you and your family. X
The full name is N-terminal brain natriuretic peptide, which is a protein released by the heart.
All of us release some BNP, heart failure is diagnosed when the heart releases elevated levels of BNP.
The higher the level of BNP, the worse the heart failure, however, the normal level is often seen as being a big number, 300 pg/ml, so don’t be worried if a big number is given.
thank you so much that is very helpful. Unfortunately I wasn’t at home when he received the phone call and he doesn’t think to ask questions so the info I have is very scant at the moment. Hoping to know more soon.
"We don’t know how long and my husband is reluctant to ask but we are both worried."
Ask and be persistent. Obviously we can't know the circumstances but lots of heart treatments can be by medication rather than surgery and the sooner you ask and get in front of someone the sooner you will both know. Anxiety will only make things worse.
I agree but unfortunately he is reluctant because of his fears. I will continue to encourage him. When he had OHS it was myself that did all the chasing and pushing to get things done, it might have to be the same again. Thank you.
The blood test is quite reliable to measure heart failure.
I get BNP level measured quite often and can go up and down depending how under stress/damaged your heart is.
Heart failure has different stages and I want to be positive because nowadays there are loads of new great drugs which can help his heart to function better and slow down the process.
I don’t understand why people don’t like to call it heart failure, it is the correct medical term and I think it is important for every patient to acknowledge it so it can be treated properly.
The most important thing I can think of is to make sure to be under the care of a good centre and to make sure that the AF gets treated asap.
Any type of irregular heart beat will add stress to the heart and worsen its conditions.
Has he been offered a catheter ablation to treat his AF?
Thank you for your reply and positivity. It is also good to know that the blood tests are reliable but checked regularly. I think once we have seen the cardiologist it will be clearer as to exactly where he is at. He had an X-ray appointment date come through for just over a weeks time so I’m hopeful things are moving fairly fast.
Unfortunately, when he had open heart surgery he was told there was nothing they could do about his AF and would be on blood thinners for life. He was given the choice of Warfarin or Rivoraxoban and choose the latter.
Like everyone it’s the waiting that’s worse because you don’t have the full picture.
From my own experience and others on here I can fully understand why the word heart failure is a problem with people, when people are used to the word failure and how this is perceived as a negative and that means mentally that something has broken and can't be fixed and needs replacing it puts the worst thoughts in people's minds!
Remember for most the only time when 'heart failure' is more than an expression is when it happens to you or a loved one, and at that point many will naturally feel the worst.
I am educated and well read and heard of the term heart failure but until it happened to me I didn't know what it really meant and as I have said it lead to the worst thoughts possible. (and I would add friends and family didn't know what it meant either and my sister is a nurse (but not general nursing).
It was only really from the medics and the lovely people on here I am now know.
You say it's not a problem, a lot would disagree particularly the Spanish medical profession. Just because something has always being called something, if there is a better term that comes along then there should be no problem with changing it.
are we really make this post all about calling heart failure a different way?
I’ve only pointed out that heart failure is the correct medical term, that’s all, you can call it whatever you want.
What doesn’t change is that it is still an organ which is damaged beyond repair and the only thing that can be done is to delay as much as possible the worsening of it.
In fact, I’ve got to point out a mistake in my previous post: I used the term “ treatment”, for heart failure there is no treatment, just managing the disease as you cannot get cured.
I have stage 3 heart failure, I refuse to beat around the bush, I know that I’m very likely to die from it one day and I’m at peace with it as I was born with heart disease.
Maybe my prospective is different because it is not a shocking surprise for me and I’ve always been very pragmatic .
To the owner of the original post I write again: all the best to your husband and don’t get too worried, there are many fantastic drugs which can help to manage the disease very well and hopefully will help him to lead a good, normal life for the years to come.
It is good to hear that his condition can be managed by medication and give him the opportunity of a good normal life. I think medicine has improved so much that HF is no longer the same as it was 20/30 years ago and I’ve been passing onto him all your wonderfully positive stories in the hope that he takes it onboard while awaiting the cardiologist appointment. Thank you.
You said you 'I don't understand why people don't like to call it heart failure' I was replying to that and hopefully (and it looks like failing) to help your understanding why people don't. That was all.
At least I can fully agree with your last paragraph.
Hi, Hopefully your husband will have an appt with a Cardiologist soon and have his worries alleviated to some extent. As someone whose had, multiple valve replacements, repairs, have a Pacemaker, Permanent AF, amongst other heart matters, when I was diagnosed with Heart Failure in 2021 I was a bit spooked, so I can understand his worries. Personally, the term Heart Failure doesn't bother me, besides there are so many different ailments that come under it's umbrella, for example I have Left Ventricular Systolic Dysfunction, something of a mouthful. It also focused my mind and something I couldn't hide from, but, to be honest, it's just another heart related condition to me now 16 months on. I don't envisage having any further surgery due to HF.
In my experience, it's likely the next step will probably be an Echocardiogram, which he'll be used to, I'd have thought, diagnosing why he has HF would be a priority, and then treatment and/or medications to suit the diagnosis can be established.
thank you so much for your reply. Having read everyone’s replies I’m more at ease. He’s had an appointment come through for the end of next week for a chest X-ray and the doctors text him yesterday to say the cardio has a knot the referral so hopefully things are moving swiftly. I’d said to him he will probably need an echocardiogram but that’s ok as he understands what happens because he’s had one before and it was a simple procedure.
My husband has had heart failure for 22 years and we found out when the heart failure nurse knocked on the front door. Check out the web site Pumping Marvellous. It is full of information and don't go on google.
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