I've just joined as I'm still in a state of shock, I went to A&E just to get myself checked out, and didn't expect at all to be told I'm dying. The A&E doctor was so blunt and it was totally unexpected. She said I had AF, having accessed my notes with my consent, and something about heart block. I refused to stay in as I hadn't gone prepared at all, and I didn't want to die in hospital. I contacted my GP who wrote to me to say there was nothing untoward in the hospital results that he could see and stated that in his belief, I am safe. He made me an appointment to see him a fortnight later.
When I saw him face to face, I asked him, where did the hospital doctor get the reference to AF from, because I've never been told I have AF, only that I had low potassium when I went to A&E 6 years ago. He scrolled back in the notes, and then said "I missed it."
So for 6 years I have gone with AF untreated because by his own admission in front of me he missed it. Now it looks as though I'm saddled with a death sentence.
I've made an appointment to see a specialist privately in 2 weeks time to get another opinion, but I'm not hopeful now. I suspect they will try and put me on warfarin in due course, but I've read that this can have really bad side effects such as internal bleeding, which could hasten my demise. Can anyone offer any friendly advice please, because I'm still in a state of shock, as I've clearly survived for 6 years, but now feel that my time is limited? Many many thanks.
p.s. I've had a soft heart murmur for years and the GP knew this also.
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Hi, I would not call Afib a ‘death sentence’. It is one of the most common heart rhythm disturbances. It is not regarded as a life-threatening heart rhythm problem, but it can be troublesome and often requires some form of treatment.
Admittedly, an initial diagnosis of any sort can be a troubling and worrisome event. My introduction to Afib was a heart attack caused by undiagnosed and untreated Afib; it was a shock.
This was 5 years ago, my Afib is well controlled with medication and I lead a very active life - working, travelling, running and climbing. My Afib diagnosis, so far, has not impeded me at all. My condition may change over time but there is a variety of other treatments that can be brought to bear.
The AF Association host a site on this HealthUnlocked Platform too. I would suggest you open a post there. There is a wealth of information and support there from their staff, as well as an active community of people, like me, living with this condition.
Thank you for your kind reply. Unfortunately, I have gone downhill rather rapidly in the last couple of years and whereas I used to walk for an hour each day, can barely walk at all now due to the breathlessness, so I am much much slower. I thought it was because I'd turned 60 and so slowing down a bit would be expected, but not to this extent! The A&E doctor also mentioned heart block, so I'm not expecting miracles. She was taking no prisoners though and just came out with it "you do realise you are dying", and I was just so so shocked.
I have read about untreated AF and the longer it goes untreated the less favourable the outcome. I just feel like I've been handed a death sentence from nowhere.
I wish you well on your own journey with your health and thank you for your response.
The A&E Doctors comments clearly would have been alarming but don’t jump to any conclusions until you seen the specialist. It’s easy to start catastrophic thinking, I’ve been guilty of that myself and it doesn’t help.
My Afib is paroxysmal- intermittent. I had my MI at 53 but I don’t know how long I had Afib prior to that. Surprised I was so oblivious to it. It could easily have been stroke too, which I think would have been far more damaging.
My heart was damaged by the MI but now years later, I have recovered and on my last echo it was structurally normal again.
You mentioned anticoagulants and your concern. Yes, there are risks but they must be balanced against the risks of AF. I was on NOAC for a few years and during that time, I continued rock climbing and cycling. There were a few small bleed issues but nothing serious.
We are all dying, sometime and fear and stress will make you feel shocking. Medication is great these days so don't despair. My cardiomyopathy is stable. I have Left Bundle Branch Block and AV block as well as leaky valves etc and don't expect them to shorten my life. My problems (as far as I know) began twelve years ago and I'm in my 80s. I know someone who has complete heart block. She has a pacemaker and is doing fine. I also have friends with AF and they are also doing fine. Never give up, and try to talk over your worries with a counsellor or someone qualified to help. My best wishes for the future.
Yes, I was told ‘I am sorry but your heart is worn out’. No hope was given. Three days later I read the cardiac brochures and saw there was meds etc available. So ask. I was so devastated for three days. I’m awaiting a biventricular,pacemaker.
From what I see you are certainly not near dying. You should be put on anticoagulant therapy to protect against blood clots forming in your atria and then spreading to various parts of your body. If you have a conduction disturbance in your heart like AV block, it may have slowed your ventricular rate so that you didn't experience palpitations these years. A cardiologist should evaluate, advise,treat and follow you. I'm optimistic that your condition is quite controllable and stable.
I have an 85 year of friend staying with me at the moment who has been in atrial fib for 30 years. Takes his anticoagulant and beta blocker each day . Functions well.
I was told many people live with permanent AF,I had AF last July and it made me feel sick,whoever 1st stated you have AF should have referred you to cardiology- was that missed. AF isn't a death sentence apart from face you have to get on with it,I don't have AF now as they found I have a hole in my heart
I shouldn’t have read this as I have anxiety centred around the heart. I have the para afib an episode at least once a month. I am on an anticoagulant and I entesive testing via the nhs and private who say my heart is fine. I also take a betablocker which made my afib less noticeable and kept my heartbeat to less than 100 while in a fib. Afib can be managed and is not a death sentence .
I have afib. It's is genetic. My father and his sister had it and one lived to 90 and the other to 95. They were both on warfarin... but you can get different anticoagulants today. I am puzzled that an A and E doctor would have said that you are dying........ well we are all on the way, I suppose.... but hoping your GP hasn't missed anything else! I think that A and E doctor should be reported.
If it’s genetic, then it looks as though I could be in trouble. As I’ve just mentioned, my birth mother died at my age.
I hate social services, I class them as murderers, because they will not help you one iota if you were a closed adoption. Open adoptions they help you trace birth parents to get medical information but closed adoptions they won’t help as I asked around ten years or so ago and they point blank refused as my adoption was before the law changed.
In the title of your post you say troponin level 5. Was that your troponin level?I ask as the hospital here begin to be concerned if your troponin level is above 14, the highest I've had, that I know about, is 37, and my understanding is that in cases of a HA it will go much higher. Mine was high enough to require a few hours observation.
I think the doctor who spoke to you was very much in the wrong. She has not explained anything clearly. Many people have AF for years without knowing about it, and it is not a death sentence.
You seem concerned about Warfarin, but most people are prescribed one of the newer anticoagulants. It really isn't a problem, I had to be dragged kicking and screaming to anticoagulants as I always bled far too freely and imagined all sorts of horrors, but I've come to understand I need them. If you need surgery you may need to stop them for a little while but I've had 3 minor surgical procedures including cataract surgery without needing to stop.
I was 69 when first diagnosed 3 years ago. You need proper information, and a decent care plan. Good luck, let us know how you are getting along.
I have afib. It's is genetic. My father and his sister had it and one lived to 90 and the other to 95. They were both on warfarin... but you can get different anticoagulants today. I am puzzled that an A and E doctor would have said that you are dying........ well we are all on the way, I suppose.... but hoping your GP hasn't missed anything else! Your high tropanine levels seem to indicate another problem possibly separate from afib. I think you need to return to your GP and have a heart to heart or insist on a referral to a cardiologist to get a full picture of how to progress and feel better.
I really think you may need some mental health support as well as the cardiac appointment. I feel understandably you have anxiety over your health and annoyance that the doctor didn’t tell you. Millions of people have Warfarin and the vast majority of people are ok. If not, there are other options. I’ve been on Rivaroxaban for quite a while now.
Over a million people in the UK have AF and some people don’t even know they have it.
The A&E "person" should be sacked!! Numerous people have AF and live totally normal lives with treatment. Do not be phased by warfarin either as millions have been kept alive by taking it. I have been on it for 22 years and there are many who have been taking it for decades! It affects ones life very little in the greater scheme of things! Get some real clarification from your GP. It's their duty!
My trop level was over 1,000 when I was admitted to hospital in 2020. I was diagnosed with AF and HF. I take anti-coagulants along with other mediation and I feel good most days. I am 79 soon, and hope to celebrate my 80th birthday next year. Please do not look on this as a death sentence, you have many good years ahead of you. I still enjoy a gentle workout, walking, dancing and my exercise bike. Taking one day at a time is all we can do in life anyway, no one is guaranteed tomorrow. Best wishes Marianne. x
Hi Marianne and to everyone also, the fact remains the A and E doctor told me straight out “you do realize you are dying?” It was such a shock. I know we all have to die sometime but I hadn’t been ill, just slowing down a bit. Perhaps she put it together with the fact that I also had sepsis in 2018 a few months later, I just don’t know.
I’ve made myself an appointment to see Dr [[REDACTED]] privately and will see what comes of that but it will have been 5 weeks by the time I see him since that A and E doctor gave me a death sentence. I don’t have any family or friends to speak with so thank you so much everyone for responding. I’ll let you know what happens if I can. Meanwhile, I wish all of you continued good health, fingers crossed, and a lovely summer xx
I hope that Dr Clifford will be able to help you, and maybe put your mind at rest. We are always here for you to come and share your experience`s . Have a lovely summer too. Best wishes Marianne. x
Hi,I have had a heart murder since I was a child!!! I'm 64 now and still have one!!! As far as I know, they are very common and not life threatening. As for AF, I had that after my double cabg last year. AF is controlled by betablockers which slows down a fast heart beat and also regulates your blood pressure. I am on bisoprolol and now my heart rate and BP are both within the normal range.
I am so sorry that you have experienced this, especially being told you are dying!!! I am no GP but I would say you are definitely not!!! Please don't give up hope. If all you need is a tablet to regulate your heart beat then you are very lucky, and can go on to lead a very long life!!! One final thing I would strongly urge, and that is please try NOT to Google anything!!! It's the worst thing you can do.
Hi. I have AF and its constant, but docs seem to have it under control, and its not definate you will be on warfarin, it didnt suit me so I am on tablets, and 84 this year so not doing so badly. Try and put aside ideas of medication hastening your end and rather view it as an aide to carry on for years yet!Good luck, am sure you will be better when you get this sorted!
That comment was disgusting and totally wrong. AF is NOT a death sentence. There is an increased risk of having a stroke which is why you will be given anti coagulants. That' s unlikely to be warfarin; there are other tablets these days. I have an arrhythmia but not AF but I do have a friend who is in permanent AF and has been now for 7 years. Apart from getting short of breath she's fine and lives alone. Now in her 80s she still climbs ladders to mend the roof, has dogs and a vegetable garden.
Thanks, I’m grateful to everyone in trying to boost my morale I really am, but when I saw the gp I handed to him a do not resuscitate form because I thought if the outcome is terminal I want a dnr in place. He didn’t argue it and say I think you should wait on tests etc, he took it, witnessed it, but then said he wasn’t sure he could witness but he kept the forms. So now I’m in the dark with that as well. It’s such a mess and I’ll just have to wait for clarity, but the A and E doctor was so adamant, she was taking no prisoners.
I don't think anyone is trying to just boost your morale; they are just stating fact. AF is NOT a terminal illness. Did you tell your gP WHY you wrote the DNR? That stupid A&E doctor's done a real number on you and needs reporting but it's up to you to tell your GP what happened and t o him to explain properly. If you haven't told him what happened ( sorry if you did) then he can't help you.
But he didn't explain anything to you? I think you need to go back and ask him to explain exactly what's wrong , whatt he treatment and prognosis is and why that A&E doctor said what they did which was so wrong and so unprofessional.
Are you sure they didn't say you're not dying, as in a type of jocular bedside manner, and you've perhaps missed it, as in...'don't worry, you're not dying'. Because for the life of me I can't imagine any medical professional telling someone with your condition this. If they did, they need, at the very least, a good talking to.
Definitely not, she said “you do realise you’re dying”. She then said she wanted me to stay another three hours for further blood results and I said then what, and she said it was likely she would admit me. I then told her I’m not dying in hospital I ll go home and I became a bit tearful and said besides I have no spouse or dependents so it doesn’t matter and I’m not waiting another three hours because everyone out there has someone with them spouse friend or family and I have no one so I’m going home. As I had said I was going she asked me to repeat back what she had told me which I did, and then asked me if I was suicidal which I thought was odd, given what she had just imparted to me, but with hindsight, I suppose she didn’t want me walking in front of a bus or something on the way home.
What had happened prior was that I’d paid privately for two mri scans next door at InHealth but there was such a delay I had the first and said I wouldn’t bother with the cardiac one, but I felt a pain in my neck as I was leaving, which has never been there before so decided to nip in to A and E to check it out. I just wasn’t prepared at all for what was coming. I felt a bit bad nipping in to A and E as it was.
I haven’t been to the gp in over a year and I try to stay away. I’d felt okay just slowed down a bit and more breathless than usual. I’d got anxious last summer when my neighbours on one side were banging doors, playing loud music and screaming, and these are educated people.
I started to get tingling in my arms and fingers for a few weeks and couldn’t use my right hand hardly for a week but it recovered and I thought nothing more of it. I don’t think I had a stroke.
So why I am supposedly dying who knows but I trust Dr [[READACTED]] to find out for me.
I also don’t understand that if I have AF, why does my Apple Watch never tell me so? I check it for AF here and there and it’s always fine. I’m totally perplexed. I asked the gp after he d said he d missed I had AF recorded on my notes 6 years ago, so who do I believe? Him or the A and E doctor. He said nothing. He did tell me he wasn’t happy with what the A and E doctor had said but that was before he realised he had missed AF on my notes!
To be frank, I feel that both of them have been way out of order. And I’m left with increased anxiety. I had to break it to my brother who is not blood related as I am adopted, but he has already had a heart attack and a stroke a few years ago.
Furthermore, I only discovered just before Christmas that my birth mother died at my age in a clinic in France but I don’t know what of, France do not put cause of death on the certificates, and the clinic have ignored my two messages to them.
My dad is 93 and has A-Fib and he had it for years without even knowing. It was only a couple of TIAs in his 80s that they discovered it, as he was one of those who wouldn’t go to the doctors for any ailment. He is only prescribed one tablet daily, that is a blood thinner. Pretty good for someone his age.
I totally understand that the A&E doctor's unthinking comment has taken the wind out of your sails, but look at how many people have given their positive experiences of AF. I have paroxysmal AF and have been on warfarin then a newer anticoagulant for over 10 years. I was really keen to get anticoagulated. My husband has permanent AF and has been on Warfarin for nearly 10 years as he also has several stents following heart attacks and a dicky valve and a degree of heart block. His pre op ECG before a hernia repair looked like a train wreck. We live a full life, though this year have decided plenty of good hols available in UK. Do look on the AFA website and AFA group on here. There is also a helpline where you can get info about your condition.
Nothing has changed since before your A&E visit apart from the information you've been given. You are the same person and as far as you know your health is as it was.
Thank you so much. I can’t do anything now for a fortnight anyway so as the motto goes Keep Calm And Carry On. Thank you to everyone for all the kind words and invaluable advice. I felt as though I’d been written off but you’ve all given me some hope, so thank you so much. What a lovely and kind group of people you all are, thank you from the bottom of my heart xx
Hi, I think Doctors like playing God, after a serious, out of the blue HA I had a junior dr say to me, you must realise you are dying dear, I said at 73 it is highly likely, which quite took the wind out of her sails. Any way I’ve survived to 77 so far, Had a very serious illness from that we cannot mention on this site subsequently, went for a second opinion, as I walked into the room the dr said why are you here, you should be dead, which made me laugh, it’s amazing what you can survive. The medical profession just want to frighten us into compliance.
AF is not a death sentence… it is a symptom caused by an electric pathway issue … and is often easily controlled.
My mother had this condition for twenty five years … now that you know you have it.. you can take steps to keep it manageable… I.e. use magnesium taurate … change diet to reduce calcification … reduce inflammation with fish oil …K2 and niacin helps…use low dose aspirin .. regular walking… lose weight….lower stress…just these alone often will improve the condition… and possibly keep things under control…. take the positive steps ..Best wishes
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