I was diagnosed with Afib in A&E after a very symptomatic episode just over 5 weeks ago. I know there are long waits everywhere at the moment but I haven’t heard anything from the hospital about the echocardiogram appointment they said I would get and my GP still hasn’t received a letter so I’m guessing it would be best to get this done privately?
Is it best to get the echo done and then make an appointment with an EP or do I make the appointment and let the EP arrange any tests they want? I was hoping to pay for that then ask to be transferred to an NHS wait list. I presume that’s the way to go?
Also, I don’t live too far from Wythenshawe Hospital and Manchester Royal Infirmary. Can anybody recommend an EP in this neck of the woods please?
Any advice greatly received. Thanks all.
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AnnaMill
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Thanks Etheral. I got sent home from A&E with Edoxaban so I have been taking that every day since. I’ll be sorting out a private consultation this week. Thanks for responding. All the best to you.
Even before the pandemic the wait to see anyone would be 18months to 2 years in our area but I would keep pestering your GP, do your research and learn as much about AF as you can - AFA Virtual Patient Day is coming up soon and I learned more attending a Patient Day than in the previous 7 years of dealing with AF - this link will get you started
Know that AF is not an emergency nor immediately life threatening, although sometimes it feels like it, and therefore not considered by many doctors as such and therefor not prioritised within the NHS. Resources are short and spread thinly so also depends where you live. You get much better treatment and advice if you are prepared to travel to one of the big centres and Liverpool Heart and Chest is probably your nearest but my sister works at Wythenshaw so I’ll ask.
I would also recommend you look out for Dr Sanjay Gupta’s videos from York Cardiology - all on YouTube as he explains AF and it’s treatments very well and is very popular on this forum.
Protocol is usually your GP will assess you for Anti-coagulants and advice accordingly and then possibly suggest a Beta Blocker if your heart rate becomes a problem and is high in AF. If this is not affective then a referral to someone of your choice - if you do your research you can ask to be referred to that person. Through the NHS that could take some time and many people with infrequent episodes are managed perfectly well by their GP’s. Your GP can ask for Echocardiogram and should do a full blood panel - make sure they include Thyroid test. And then you wait - unless you see someone privately - cost for consultation £200-300 but any tests they order will be on top of that cost so best if you can get copies of everything and take to your consultation.
Just having a 30 minute talk with a specialist can be SO reassuring so IMHO - sooner the better.
Any burning questions - just ask here - Best wishes CD.
Thanks CDreamer, that’s so helpful. I’m not so far from Liverpool either so I’ll definitely look there too. I’ll try and get a face to face appointment with my GP this week and have a proper chat.
I’ve already watched a lot of Sanjay Gupta’s videos. I love his positive attitude and his approach is such a breath of fresh air. I’d been mulling over the Virtual Patient Day, I’ll take another look now.
Hi Anna, my diagnosis was in similar circumstances to yours; A and E, where I was put on Edoxaban and Bisoprolol. That was at the end of May. I had a telephone consultation with EP cardiologist at the end of July. Am now waiting for echocardiogram. I’m in Lancashire and am under the Lancashire Cardiac Centre in Blackpool which I am told has a very good reputation. When I have had an echo I am likely to make a private appointment to see EP rather than wait the 8 months he suggested until my next NHS one.It’s not easy getting to grips with this is it?! Take care.
It’s definitely not easy! I’m really grateful to have found this forum though, what a difference that’s made.
We’re definitely similar. I was diagnosed in A&E at the end of July this year ….. although I had an identical attack 12 months previously and was sent home after several hours in the same A&E with a diagnosis of ‘just one of those things’!
Thankfully this time, like you, I was given Edoxaban and Bisoprolol.
I’ve found it quite hard this last few weeks just waiting for another attack to strike! I’m really hoping it gets easier like everyone says it does. Thanks for replying and very best wishes to you. I’ll keep a look out for your updates.
Thank you! Glad to hear you’re on meds now. In my ignorance I had assumed I would be fine , now I’m on meds. Last Monday brought me down to earth when I started with some sort of episode - short periods of skipping beats. That lasted through the week but now seems only to do it maybe once or twice a day. I think I made it worse by being anxious about it. Just hoping I’m less tired today. Hey ho…. Lyn
I’ve found the beta blocker makes me tired even though it’s such a low dose. I’ve also noticed skipped beats more and brief episodes of faster heart rate but it seems quite steady so I’m wondering if that’s anxiety? Who knows … it’s been a funny few weeks! They recommend magnesium for skipped beats, maybe you could try that? I have some here. I’ve been looking at it for a couple of days trying to find the courage to take it!
Anyway, take care. I hope today is a better and skip free day … Sue 😊
Waiting for another attack to strike is guaranteed to do one thing - spoil your day to day life! It is not uncommon at the beginning of an af journey for episodes to be well spaced out. I have gone as long as 15 months between episodes and in the first 6 years had 2 years with no attacks at all and only 6 attacks altogether till the beginning of last year. It is hard to relax and forget about this threat that we feel hanging over us and paradoxically this often gets easier further into the journey. If your symptoms during an attack are very bad you could ask your GP if you can take extra beta blocker as a PIP. I find that my regular daily dose does not stop the fast heart rate and I am not prepared to take a higher daily dose as it leaves me feeling lethargic and breathless. Spending hours with your heart racing can leave you feeling like you have run a Marathon. You do not say in your post what the circumstances of your attacks were. Sometimes if the afib comes on when relaxing after dinner or in the night one can look at what one ate ( or drank!) to see if there might have been a precipitating factor. A lot of people here have had to give up alcohol. Others can manage with a small amount. I can no longer tolerate coffee and even small amounts of chocolate can bring on the odd palpitation. Many here have been helped by taking a magnesium supplement so don'be afraid to take it.So while you are waiting to see an EP and have the echo here are small things you can do to help yourself. Try to look on the positive side. It might be another whole year before you get another episode or even longer.
Thanks for that Auriculaire. You’re absolutely right I know and I am getting there … very slowly but Rome wasn’t built in a day I suppose, My attacks both occurred under exactly the same circumstances. Long day at work, came home, grabbed something to eat then dozed off on the settee. Woke up half an hour later with my nose on my chest, stood up and wham, all hell breaks loose! Even I can see there’s a couple of triggers there so now I make sure I stay well hydrated and I don’t slouch …. Well not too much anyway!
Thank you for the good advice, it’s much appreciated.
Hi AnnaMill, I was scared to death when I ended up in A & E twice one month apart this time last year. I also think I had afib a couple of years ago as I remember a similar episode with a racing heart rate of over 170 bpm at rest. Fast forward and I had an echocardiogram and then paid privately to see an EP. When I was first diagnosed I had these awful episodes which came every Saturday and lasted until the Monday, this was very weird! My EP changed me from Flecainide (the hospital prescribed it) to Sotalol and things settled. I went through a few wobbles with fluttery feelings but been well controlled now for over 6 months. I know it won't go away and the meds are controlling it but you find a way of just accepting it and forgetting about it. It does become more acceptable and less scary as time goes on
Exactly what I did. I'm now waiting to see him at St Thomas but alas covid has struck again and the hospital said my appointment will be yet another call instead of face to face.
Look up Derrek Todd who is one of the best EPs in your area. . An echo is not vital and merely looks at the mechanical function of the heart ( valves pumping function etc) so not yet having one does not limit treatment.
Derek Todd did both my ablations. I saw him privately first at The Spire, Warrington. Best £200 I’ve spent. He then transferred me to his NHS list and at Liverpool Heart and Chest Hospital. I’m in West Yorkshire but was prepared to travel. Hope you get sorted soon. x
Thanks for that Frances. I checked him out before, he looks really good and Liverpool and Warrington are both doable for me. I’m definitely keeping him in mind. Take care, all the best.
I hope you manage to get an appointment with an EP privately and can get things sorted. Wythenshawe is a fantastic hospital we travel there - Covid permitting for my wife's lung problems and cannot speak highly enough of the care there. Since Covid she has had telephone appointments and can arrange Zoom meetings. I imagine these standards are carried on through the whole of the hospital. Best of luck.
Thanks so much. I have heard good things about Wythenshawe and it sounds like your experience has been very positive. All the best and thanks again for taking time out to reply.
Hi I can only speak on my own experience but I waited only 7 weeks for the cardiogram and 2 weeks after that had a 24 hour monitor, but I do appreciate that all areas are different. I would call your local hospital and enquire what their waiting list is like. You can also call the cardiac nurses at the BHF, they are really helpful. Good luck with your new condition, the best piece of advice I’ve seen on here is, be attentive not obsessive.
Thanks Blue_Dino. That does sound like good advice. Not sure if I’ll be able to switch my obsessive gene off for a while yet though! I didn’t know there were cardiac nurses, I’ll definitely check that out. Thanks again and best wishes to you.
After being diagnosed with AF many years ago, I too was annoyed at the wait for an echo scan. I was a little in headless chicken mode, no one had explained anything to me about AF and all I knew was something was wrong with my heart - was it serious - was I going to die! I paid to have an echo scan after I heard how long the wait would be. By the time I had the private scan it was not too far from the date of the NHS one. I think many years ago around 1995 it cost me £200, but what I hadn't bargained for was paying someone to tell me the results. So make sure if you book one you have the whole package.
I have to admit I felt a bit silly when I heard that structurally my heart was fine (most of us AF people are told that), just had a slightly leaky mitral valve but that was normal for people my age and of no concern. To be honest I wished I'd waited for my NHS appointment.
AF is most unlikely to be life threatening. If you get a private appointment with an EP he's going to be unlikely to tell you anything about your heart until he's seen an ECG. From now on if you have an AF attack and it's recorded in A&E, ask for a copy for your records. My GP's surgery has an ECG machine and if my heart kicks off, I call them and go straight down to have it recorded.
Now 16 years later from my first attack I don't worry about them unless it's making me feel bad. I just sit it out, while doing deep breathing. If I had chest or back pain, felt dreadful, nauseous, sweaty or faint. I would dial the 111 no for advice, or even 999.
Thanks so much Jean, that’s all incredibly useful advice and the start is exactly like I am now. I’ve taken onboard everything you’ve said. Thanks for responding and sharing your story. All the best to you.
My circumstances are almost identical to yours except I was at Guy’s in London. I had an Echo done because they wanted to check my heart was OK to take flecainide. All I can say is that if you have Echo done privately everyone you see is really grateful for the info and every decision is made more quickly. It also gives you peace of mind. Mine is still not sorted but I have faith it will be. Best of luck, Lisa
My experience of the NHS is extremely disappointing. I hate to say go privately, but if you can afford it in the first instance, then I wouldn’t like to guess how long you will have to wait otherwise. I feel you have to nag the NHS and even then any treatments are postponed to the point it is frightening. At least if you went privately, you would get started on the treatment you need and any medications you could get repeated through your GP. It is so worrying but I was walking around on a displaced hip fracture, it took 5 weeks after being diagnosed over the telephone as having a groin sprain, to actually get to see face to face with a Doctor. It was made difficult as I hadn’t actually suffers a trauma so they would not see me. I have since tried to get private health care and because of my experience, it now appears I can’t get any to cover my bones. So yes, go privately as you can’t guarantee how long you will wait. Good luck.
Sorry to read that Doddsey. This pandemic has caused all sorts of problems besides Covid! I hope your hip is on the mend now. Thanks for responding and very best wishes to you.
As others say, don’t try to get scans before you see a good EP. I was lucky - new AF cases are seen as priority in my area snd my first EP appointment about three weeks after referral. (Choose someone well established in your local cardiology department so you can slip over, if you go privately initially). Good luck
Good advice, thank you. I think I’ve sorted an EP out already who has a clinic at my local NHS hospital. I’ll make an appointment this week. Thanks again and all the best.
Morning, I was diagnosed in May and had Echocardiogram in July, I saw cardiologist and have been referred for Cardioversion- he told me wait isn’t to long.
I was diagnosed 3 weeks ago with AF but have an scan at end of mth ..but I guess it just depends on where u live and their waiting lists. I'm on betta blocker daily and blood thinner twice daily until get scan and then see the consultant.
Wow, that’s good service! Not quite as efficient in my neck of the woods unfortunately. I’ll start chasing things up, better make sure I haven’t fallen through the net. All the best LT2511
I had Covid in January followed by high blood pressure and arrhythmia. Bradycardia, which I was unaware of. Although not feeling any adverse symptoms apart from tiredness now and then which l put down to age my pulse when tested for Covid complications was very irregular. I had an ECG and treated as an emergency. Within a week fitted with a pacemaker.
My symptoms may have been a lot different to yours. I didn’t know or feel anything. It was more or less invisible.
My advice is to get yourself an oximeter, check your pulse rate.
If it’s all over the place contact your GP. and tell them you think it’s an emergency.
If you go to see a cardiologist privately, be sure that he or she practises as part of a team at an NHS hospital where they carry out catheter ablations - a teaching hospital, best of all. Seeing an "EP" (i.e. a cardiologist who practises electro-physiology or catheter ablations) is what a lot would recommend, whereas, in the UK at least, I don't think that it matters since s/he will know the best course of treatment. What you want most of all, in my view, is a face-to-face appointment with a heart specialist. They all have the training and experience you need, and they all know that an early ablation can be the best in many cases.
If you see a cardiologist, he or she will want you to have had a 12-lead ECG for him to study prior to seeing you. Your GP surgery can do this for free, and should, or you could present yourself at your local walk-in centre or ER and tell them you have been having an episode. They will then do an ECG for sure, and you can ask for the ink plot read out.
Expect to pay around £175 for the specialist and, if done privately, about £120 for the ECG. If you have a 14-day ZIO monitor fitted, expect to pay £2000; and if you have an echo-cardiogram, £500, or, better, a stress MRI, which costs about £1400. A private ablation procedure might be between £8-20,000 depending on many factors.
Depending on your age, I imagine you have already been prescribed an anticoagulant such as rivaroxaban and, if you have persistent tachycardia, a betablocker such as 5mg bisoprolol? This latter isn't needed if your heart rate is normal.
You might already know the following from the excellent help sheets available, so ignore it if so!
Your atrial fibrillation will be caused by some "arrhythmogenic cells" that have formed for some reason near to the entrance of the four pulmonary veins in the left upper chamber of the heart (the left atrium); this part of the heart receives oxygenated blood from the lungs and pumps it down into the left ventricle for distribution to the body.
During the periods that the cells misfire, the atrium quivers rather than beats, leaving the blood to be transported less efficiently by gravity and suction from the ventricles. The quivering is modified en-route by the sino-atrial node which responds by creating an "irregularly irregular" pulse that is anywhere from normal to high (persistently over 100 is called tachycardia and needs treatment since it is this, rather than the fibrillation itself, that can weaken the heart's output or "ejection fraction" and possibly even the valves). Afib with a normal heart rate can, in my experience, be easily coped with; afib with tachycardia (or just tachycardia) is hard going, and can be debilitating.
With tachycardia, you might feel ill, out of breath, feel chest tightness or discomfort, like there's something trapped beneath the rib, a "balloon" pressure, dizzy, slightly faint, and so on. Most especially, you will most likely also feel deeply anxious, and perhaps panicky. This is an effect of fear which slightly tightens the rib muscles to cause rapid, shallow breathing; this can alter the blood chemistry temporarily to make you feel s if you are very ill, even as if you might be going to die (a feeling called "impending doom"). In reality, you are safe and this feeling will pass as the oxygen / carbon dioxide balance naturally returns.
What causes arrhythmogenesis? It seems it's not fully known but as well as genetic predisposition, or prior heart conditions or surgery, a modern lifestyle with a high BMI, lack of exercise (and even, in a few athletes, too much extreme exercise), diabetes, smoking, recreational drugs, hypertension or heart muscle problems are all said to be associated causes.
What causes the atrium to quiver? Again, it's not fully known, but otherwise harmless palpitations (i.e. ectopic or "missed" beats) are known to precede afib, and these can be caused by the heart being physically irritated from, for example, a distended tummy, constipation, some physical movements (sitting down scrunched up) and so on. Stress can do it also, it seems, as can certain drugs and alcohol. Some people search for "triggers", but there's no proving many of these.
What would I do in your case? Well, almost certainly your heart will, physically, be fine but, thanks to any tachycardia you've had, might show some mild and reversible weakness (called, rather unfortunately, "heart failure") in the atrium and associated valve caused by any prolonged tachycardia (a rate >100bpm). If you have any of the associated other health issues, your GP can help. But, most of all, your GP will have tried to keep your heart rate below 100bpm. This will keep it safe, and any weakness that was previously caused will slowly recover as the muscle strengthens. My friend is 88 and has had afib without tachycardia, permanently, for very many years. He's absolutely fine.
I send my best wishes and, in the end, I feel sure you will be fine.
Wow Steve, so much information there, thank you! I haven’t seen any help sheets. Do you have a link for them please?
Both my local hospitals are teaching hospitals and they both have EPs who seem to be very well thought of. A couple of people have mentioned Liverpool which is less than an hour from me so I’m already spoilt for choice. I’m going to crack on with that now, I’d like to have a chat to somebody.
Again, I’ve taken note of everything you’ve said. You’ve gone to such a lot of trouble here, I’m really grateful.
I would go to any centre that carries out regular cardiac catheter ablations. Your GP will know which ones are best. In the NHS, however, I expect they will all be similarly good.
Yes, I followed that route during Covid. Saw a private EP who got me an urgent cardioversion on NHS and then an urgent NHS ablation, all during lockdown! Best £250 I ever spent though morally I had my qualms, but decided my health had to be the priority. Good luck x
I had for over 30 years. From Paroxismal , to Persistent to Permanent. Had 2 ablation procedures in my early 70's. On Amiodarone (rhythm) and Apixiban anticoagulant for many years. I would see the EP first. I hope u are already on an anticoagulant to lessen the chance of a stroke. After over 30 years I would be able to ans most questions.
You have had lots of good advice already. I would just add don't wait for appointments /tests and start on making lifestyle improvements today. You will see them recommended many times open this Forum and by several leading medics.
Thanks Secondtry. Yes, I’m on that already though it’s 2am and I’m still up so the sleep definitely needs working on! Many thanks for your reply. Much appreciated .
Tried to edit, as usual it just messes about and won't do it! Dr Todd looks just the right person for me as apart from Afib I have arrhythmia and bradycardia. Although the consult is doable, not sure I could afford any surgical procedures, the link to his fees doesn't work.
Well what a lot of wonderful advice and reassurance. I'm sure you will be glad you decided to come onto the forum. People here are very kind. It restores your faith in humanity. I am very grateful to the people on this forum. They have helped to reassure me. When first diagnosed with Afib it can be very scary. You think you are going to drop dead any minute, but you won't. No advice from me. It's all been said. Just to wish you the very best. You will be OK!
Hi Anna and welcome to the Forum, if you would like any help or information, please contact the Patient Services Team at the A F Association info@afa.org.uk. I am sure you will also benefit from joining us for our 'virtually held' HRC2021 A F Association Patients Day event taking place from Sunday 3rd October heartrhythmalliance.org/afa...
My understanding is that if you have AF and CHADS score warrants anticoagulants they will be advised, all that would differ is if you had a mechanical valve replacement the choice of anticoagulant would differ.
A replacement valve may help the AF but because one is electrical and the other plumbing - to use a common analogy - fixing the leak wouldn’t stop the wiring from shorting out so medication for the AF would be needed including anticoagulation but your body, your choice of treatment of course.
If you see an EP privately you can just go for a consultation - have the discussion and then asked to be transferred to their list on the NHS. That for many people can be reassuring. You will then at least be in the system - unless you have private health insurance then that is the way many people go.
From what I can see there is some discussion as to whether or not anticoagulation after mitral valve replacement is required for the months after surgery so that will depend upon your surgeon.
What I have learned in my journey is that there are always variables and exceptions and absolutely no certainties and that is what we really want - certainty. It’s the living with uncertainties that triggers the anxiety.
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