I rang a friend last night who has had permanent AF for about 6 years. She's now 83 and lives in the Black Mountains in Wales. The only treatment she's ever had is warfarin , bisopralol and something else she couldn't remember the name of. She's never been offered cardioversion, ablation or anything else; in fact she'd never even heard of them. She lives alone since her husband died and is now really struggling with breathlessness and tiredness. She only sees the cardiologist once a year or talks to the local c hemist. Is this normal ? Should she be asking about any of those treatments or a pacemaker? Her general health is really good .She seems to have been told very little about her condition apart from how to control her warfarin levels. Or is it typical for the NHS in Wales? I read so many comments about poor treatment in Wales.
No treatment offered for A F - Atrial Fibrillati...
No treatment offered for A F
So long as rate is well controlled and the patent anticoagulated there is really no need for any other treatment. Many people in permanent AF use this regime and live faaily normal lives. As you say,. she has annual meetings with cardiology so unless she experiences chest pain or fainting spells I would not expect any other treatment.
Thank you ; I was just puzzled that absolutely nothing else had been suggested or even mentioned as a future possibility when her symptoms are so bad. She had never even heard of cardoversion or ablation. She's not online so she can't research anything.
Breathlessness is an important symptom so I would encourage her to complain about it. If, as Bob says, her AF is well controlled she shouldn’t be very breathless! Maybe ask if any other symptoms, swollen ankles, cough, wheezing? It could be the bisoprolol but there are alternatives.
Thank you; I will mention that when I next phone. She just seemed resigned to being like that and that it was going to finish her off. She wasn't coughing but didn't mention any swelling. She was just bothered by the breathlessness and that she couldn't get up the slope in her garden now.
She really needs to go to her GP and tell them that. The problem with the not being able to go up the slope in her garden. She needs a full review. She may need a dose or medication change.
That's what I thought. I was like that on bisopralol after a heart attack. I struggled to even get myself out of the chair.
I have been diagnosed with PAF. I too was breathless and lethargic on Bisoprolol. It wasn’t until I queried the Bisoprolol that my GP even considered this to be the culprit. Once changed to alternative medication, my energy began to return. Not turning cartwheels 🤸 but capable of a good walk daily without breathlessness - uphill included! 🐝
Certainly respect your interest and concern. Does she have family that can assist ?
As Bob indicates, the key is how well her permanent AF is controlled. Her age and other health issues may be a factor in other treatment options.
If she does not have a GP, encourage her to find one. Breathlessness needs to be evaluated soonest. And at least annual physical exams.
I live in Wales. I have had several cardioversions and two ablations. She should go to her doctors and insist that she sees a cardiologist or if she has the money she could arrange to see one privately. It costs about 220 for an hours consultation. She is not too old for an ablation and the recovery period is less than a week . Breathlessness may be the very beginning of heart failure so she should see someone as soon as possible.
I'm sure your advice is excellent but I can't agree with recovery from ablation being less than a week. Judging by what I read on here the recovering period from ablation can be up to six months. If yours was less than a week then you've been lucky!
Hi
Um.
Breathlessness could be in fact what I have... a pause (stop) to regain the energy from blood circulating around the body. Just for a few seconds to regain blood flow.
The reason is because I have regurgitation in RV due to the severe left atrium dilation. According to my Locum doctor these two go together. (She has had AF and had an ablation) I do not have swelling in ankles although on Diltiazem 120mg.
I don't have chest problems. All clear.
The cardiologists always ask if I have flutters, palpations, or heart pain. I have no breathlessness after stopping Metoprolol.
His friend speaks about not having cardioversion, ablation or anti-arrhymic med and that is an important pointer. I can't either even at 70, then.
But her breathlessness if it is that needs to be checked out. It's a new development.
It happens on exertion.
cheri JOY. 74. (NZ)
Quality of life should come into it surely. Being a little cynical....or is 83 regarded by some as ' written off ' ?! I know of many a fit and active octogenarian.Could this lady afford to explore her options through an initial private consultation?
I disagree. There’s plenty that can be done, starting with cardioversions to get her out of Afib so she feels a whole lot better, then an ablation that can possibly fix the problem and add considerably to her quality of life. 83 is definitely not too old, especially if she is otherwise in good health. Quality of life is precious.
If she’s already been on Bisoprolol for some time without muscle weakness or such breathlessness then maybe something else?
Age 77 myself, from personal experience of poor heart function another key issue can be pulmonary oedema, i.e. fluid retention in the lungs. Early signs of poor fluid clearance from the body is usually from swollen lower legs & ankles. & usually controlled via diuretics such as furosemide.
It was breathlessness that first got me diagnosed with cardiomyopathy back in 2014 & for many years I needed diuretic treatment. Changes in heart treatment much later had the furosemide dropped but in April last year, unbeknown to me, prob due to my heart function dropping further I suddenly found being a little breathless turned into full breathlessness …, almost no air could be breathed in. (And yet my blood oxygen level stayed at 97%)
Ended up in hospital & apart from anything else regarding heart function, returning to furosemide just at a low 20 mcg dose helped rapidly clear my lungs & remove the breathlessness.
What had fooled me was that at the time, my ankles were still only slightly swollen & a comparatively disproportionate amount of fluid had been retained in my lungs.
So suggest well worth getting your friend’s lung function checked out for fluid retention.
She hasn't mentioned muscle wastage. The only thing bothering her is the breathlessness. I don't know how long she's had bisoprolol; presumably from diagnosis. As far as I Know, she has no swelling. I don't call her often and she's usually reluctant to discuss her health but I do know up to this she was very fit and active; had dogs that kept her very busy and has no other health problems. I can only make suggestions to her next time I phone but I Know what her response will be. "Oh I just put up with it".
Just out of interest, how is something like cardiomyopathy get diagnosed? Does it show on an echo scan? Don't worry, I can google it.
I just did and I know she's had regular ECGs and an echo scan so I'm guessing it would have shown up.
Please do try & get her to at least have her lung function checked. Breathlessness is pretty horrible to the point of frightening in worst cases. In her situation symptomatic AF itself can include breathlessness.
Scroll down a little here …
heart.org/en/health-topics/...
(I have the dilated cardiomyopathy version. Discovered initially from a chest X-ray following severe breathlessness. No AF back then!)
I'm only 62 so a lot younger and am in permanent af. It's only treated with 2.5mg Bisopolol. I had one cardioversion when I was first diagnosed 7 years ago. As that only lasted 2 months I can't see any point in another. I haven't seen a cardiologist in nearly 5 years. Id like to see one to get checked but it's impossible unless something new is wrong. I'm managing ok but don't know if anything is going on inside after all this time.
Hi
I'd be interested what the other med is - may be a CCB or an anti-co.agulant.
If her heart structure is abnormal she won't get offered the 3 procedures you mention.
An ECHO will show imperfections.
Each time before and after I see a Cardiologist I have a ECG and 24-hr Heart Monitor and the before the first visit to the cardiologist an ECHO.
I had another before my last operation because 2021 was 2 years ago.
Now I have been discharged as an outpatient.
So unless I bring up problems with Dr I will then be referred back to the system and Cardiologist.
The first Cardiologist did change me off Metoprolol BB but left me still uncontrolled H/R Day with Bisproprolol. Dr was simply increasing the dosage.
By the way Metoprolol which I declined at hospital after the stroke with AF Rapid and Persistent was given 3 to me daily. But it was clear carotid arteries but a shadow on thyroid. (Later proved Papillary cancer).
Metoprolol made me breathless, fatigued, no energy and the 24-hr Heart Monitor showed pauses at night.
The Cardiologist said AF patients should have Bisoprolol and not Metoprolol because it affects the airways but asthma patients shouldn't have it.
So on total I was left in rapid H/R Day avge at 186 then 156 for 2years 3 months. This I feel damaged the structure of my heart.
I was referred by my Locum to private Heart Cardiologist who cared. He introduced CCB Diliazem 180mg which was too much dosage. This was quickly reduced to 120mg AM and NZ Heart Foundation said reduce the Bisoprolol to 2.5mg and separate it at PM.
A CCB and BB should separated.
The best ever change for me. CCB for Rapid H/R to control and BB for control of BP. I have a soft Systollic Heart Murmur which was diagnosed last year but Systollic is working normally.
I feel she, too, needs to have an updated ECHO, ECG and be examined by an interested Cardiologist. Her breathlessness is the worrying system. A.S.A.P.
She may be in persistent AF with rapid H/Rate. My H/R Day avg is now 60s. I lost 7kg over the last year.
She may be best to get her Dr to refer her privately for immediate treatment or get to A&E.
I hope this helps.
Even NZ has too many patients needing a Cardiologist.
As you can see it was the private Cardiologist who was determined to get me controlled. CCB Diltiazem isa powerful med and a low dose starting is best. But I havenever got to the full dose of 360mg! Everyone is different.
Yes I am free of thyroid cancer. Operation done in 2020.
No one Anaesthetist will operation with a H/R at rest above 100. I had a further operation to remove TVT Kit Johnson &J mesh partially out March 2022 and just had R Shoulder repair October 2023 so you can imagine that if I hadn't got controlled I would still be waiting and with the damage of both parts of me.
cheri jOY. 74. (NZ)
Hi, we live in North Devon and wife is in persistent AF since March. Treatment is on NHS. Ablation has been ruled out as she has had 2 failed cardioversions. Heart structure is not detiorating based on echo cardiograms done 4 years apart so Dr happy to treat via medication alone. Follow ups at hospital once every 6 months. Bisoprolol was replaced by Nebivolol to increase activeness, which worked.
So, my wife is currently on s similar treatment plan as your relative but only after a number of other tests.
my husband has never seen a cardiologist. Was told he has a heart condition take these tablets and that’s what he does. It wasn’t till i was in AF that I realized what he has. Hes ok with the gp it’s only recently that you get automatic referral to cardiology when diagnosed with AF.
I suffered with breathlessness. I had a new mitral valve this year which improves the breathlessness. Maybe she can ring her cardiology dept and ask to speak or see one of the team who might be able to help her. I’m 75.
I have permanent, though asymptomatic, AF, am 78, and only take Warfarin because of AF Because I'm asthmatic, a beta blocker was never prescribed when I had paroxysmal AF . I just took Flecainide daily for 12 years.
I was prescribed Bisoprolol, despite my objections, by a hospital doctor while in hospital, recovering from fast AF during an operation to remove my appendix.
After 7 weeks of Bisoprolol I started with painful urticaria and the inability to eat many fruits, such as grapes, bananas, oranges, as well as tomatoes without exacerbating the urticaria. While being weaned of Bisoprolol I had the 2nd side effect of an exacerbation of asthma which led to emergency admission to hospital.
I did used to be breathless when walking, not the type of breathless caused by asthma. I was overweight, never obese, but still too heavy. Since I've lost weight my breathing while walking has improved.
I was discharged by the consultant to the care of my GPs. The large medical practice which runs my local medical centre as well as several others, has its own specialists.
I know that Bisoprolol can cause breathing difficulties, as can being overweight.
I wouldn't worry I live in Spain. Never been offered any other procedure like inversion pacemaker etc and don't want or need any of it your friend is fine and protected like myself with anticoagulation but would add bisoprodol makes me breathless so dont take it. Not seen a cardiologist for six years Better not to be overprescribed. I would say bisoprodol is the culprit.
That's my friends mam in Ireland too. If you don't know what to ask for they just leave you on blood thinners and bisopropol. Standard treatment In our local hospital unless you complain like I did. Absolutely a disgrace.
Of course they do, this is what most of us live by with AF. No need for all the INVASIVEstuff unless the heart is getting worse and am sure she would know this herself and see her GP initially or Cardio at hospital if under one. AF is very very common, in older age, that alone will not kill us, stay on the anti coagulants, best thing for any AF.
Or unless you're so exhausted all the time from ten hours of 200,bpm every three days that there is no quality of life anymore. I didn't actually realise how awful I really felt until I didn't feel awful anymore. 12 months of blissful nsr since the 21st Dec. Being totally fatigued, with bradycardia and brain fog due to the meds is no fun. Ep took me off beta blockers to see if they were the culprits. Yep. But now my afib rvr had nothing to control it. Conversion pauses were stopping my heart for up to seven seconds, caught on ECG by paramedics, and only from I'm younger and educated myself on afib I wouldn't have known an EP existed or to ask for a referral to one. They do do three years extra training after becoming a cardiologist to specialise in the electrical system of the heart. My ablation was done in Dublin by an Englishman, an EP. My cardiologist that I had to fight to see in our local hospital (,still waiting for my echo through them nearly two years later) referred me to him.
In my experience cardiologists are not good at dealing with AF. An appointment with an EP (electrophysiologist) who understands AF is worth considering. I paid for a private consultation and was seen quickly. I was referred back to the NHS for carioversion then ablation. That made a big difference to my Quality of Life as I am able to exercise fully and not be breathless. I recently recommended the EP to a friend with long term AF and as a result they are having a pacemaker fitted very soon.
Cardiologists do deal with AF every day if a Cardiologist does not know how to deal with conditions of the heart WHO is. As for all the ablations and pacemakers etc, they are not for everyone, most of us can get by on meds alone, my Cardio, says he only recommends INVASIVE procedures if no other option, but to leave well enough alone. I totally agree with him. There are many who get cardioversion etc, it either does not work, or the problem returns, some do benefit and you seem to be one of them, but cardiologists know best.
A common symptom of AF is breathlessness. I get a bit short of breath and also sometimes find walking uphill hard (and bending over!) but mostly do not. I am 80, in PAF - have been for years and never had cardioversion or ablation and am adjusting to growing older gracefully so I don't do marathons anymore. Brachycardia and syncope faints/blackouts earned me a pacemaker 7 years ago. Please remember AF is very very common and Bisoprolol is a common prescription (I have been on it for about 10 years having not handled Metropolol or Flecainide well). Its just my opinion but I see nothing to worry about but encourage your friend to talk to her GP for reassurance.
P S
You will receive many opinions and anecdotal comments so a good place to start is
What she is on is normal, and the other treatments, ablations pacemakers etc, obviously are not considered for her, I myself am on just same meds as hers except mine is not warfarin but Apixaban.
She will be getting checked very often as on Warfarin, I would leave well enough alone, if she feels ill she should mention this at her Warfarin blood checks or see her GP, ablations etc, are only done if they feel beneficial. A lot of the time they dont work and can make situations worse.
My cardio at hospital is of the opinion get by without intervention where possible on meds alone, he offered me a pacemaker but we both agreed, wait and see if my ondition worsens but for now leave well enough alone.
I’m a year on from two valve repairs, a Maze procedure and Atriclip. I still have paroxysmal AF but my QOL is good. Just to balance the thought about treatment in Wales…I live in Wales and my experience has been excellent, both in hospital and in all the follow up. The breathlessness doesn’t sound right though and is a frightening thing to go through. When my condition was kicking off (extreme breathlessness and fatigue) I was given an ECG at the GP’s and sent to a diagnostic centre at a local hospital. I suggest going back to the GP.
My elderly friend is similar but without the breathlessness, or at least much less than your friend seems to have.
Wales is rather infamous for the quality of its NHS (although there rest of the UK is also more very poor), but my understanding is that all that likely could be done for your friend is to carry out an echocardiogram to check on the physical state of her heart and its valves. I think she should insist on that. If that reveals a leaky valve (which is very common at that age), perhaps it can be repaired? A pacemaker would normally only help if she had an overly slow heart.
Steve
Unless you complain repeatedly you will get left on the original medication. I have severe breathlessness which has developed since AF was diagnosed. Cardio Consultant said "Not my bag - see your GP" who referred me to Chest Clinic Consultant, who referred me back to GP as no fault with lungs. Definitely a Cardio problem I was told. Have now had a Perfusion Scan and an Echo Cardiogram booked for Jan. The days of following you up when you had a problem are long gone. You are discharged back to your GP and you have to ask for a re-referral.
Sorry to have to say I think this is a large part of how they keep the money coming in. Not happy with today 's medical 'care' at all. I can't quite believe how much I've learned from the Internet myself - from reputable and reliable medics (to ensure they are that is of course essential) - but my local GP apparently can't take time to do the same, and so keeps repeating decades-old information and treatment - some of which has been confirmed by medical specialists as simply not correct, and these errors have formed advice that's been given to hundreds of thousands of people, maybe more, over many decades. Dr Sanjay Gupta on YouTube, York Cardiology Consultant, imo is one of the best - takes a lot of anxiety out of heart issues.
iv had a pacemaker two cardioversion on riveroxaban and just been sighned off from hospital so yes sounds like very poor treatment in wales she should insist on seeing cardiologist and asking for treatment
OH my word, inundated today with emails about replies. Thank you so much everyone. I wish I'd found out what her other tablet was. It will be a while now before I can speak to her but you've all explained her situation well and it's obvious she needs to get the breathlessness investigated. My concern was whether it was heart failure. She does have regular contact with the warfarin clinic and a named nurse she can speak to. I'm too far away to see her in person but I do know someone who does so I will speak to them and get them to push her to ask for investigations.
Good answers provided.IMO, she should ask her GP for referral to cartiologist...NOW.
It could be bisoprolol amount.
It could be heart artery blockage related.
Probably not AFib related.
Maybe ask cartiologist if eliquis alternative to warfarin.
She's more than happy with warfarin thanks and she is under a cardiologist. She needs to phone his secretary.
I'd definitely be asking the medics what may or should be done about the problem. It's concerning that she hasn't apparently been told much at all; however, if she has any surgery needs one factor that may have a bearing on this is her age. She needs to be straight up and ensure she gets all information she can. Once we could rely on doctors to give us all related information, unfortunately now we have to be proactive to ensure we get it.
I agree . I do ask questions, my husband never does and I don't think she does either. They tried pulling the age card when my mother in law broke her thigh aged 83 until I put my foot down. I knew just how fit she was and how quickly she healed.
It's amazing how common sense seems to be so lacking these days! And I absolutely understand how hard it is to accept that we can no longer depend on the heretofore-never-failing reliability of medics to provide every care we could need. That's how trust is established of course, and it took over a century to get it firmly established. If they also ensured they listened to their patients and checked through their related conditions as well, they'd have a far more accurate picture. I was truly shocked to find this level of care disappearing like a mist, when I've been able to rely on it through my entire past life. Maybe they've just become too lazy!
Holistic care simply doesn't exist. I recently saw a physiotherapist who actually asked about ALL my conditions and recommended to my GP that I see a rheumatologist who would be able to consider ALL conditions and whether they all have one underlying cause; something not one GP has ever considered in 30 years.
Well, there you have it. Thank God you came across someone who CARES enough. At least many are now waking up to the reality of the need for proactive self-care and research! Do hope the rheumatologist will help. Naturopaths can help some a good deal, also, I've heard. Hope you have a safe and healthy end of year, Qualipop!
I am 81 and also have permanent AF. I understand that if you have permanent AF ablation does not work. I am taking Apixaban anticoagulant and Bisoprolol. I did start with Warferin but couldn’t maintain the correct levels. I do get quite tired although I am generally active. I only get to see a cardiologist every two years and actually had to ask for this as my condition was not being monitored at all. It I also take water tablets which the cardiologist prescribed to take pressure off my heart ( I have three leaking heart valves) Generally I consider myself in good health and suggest that it’s a good thing that your friend is not on the Internet, those of us who are sometimes imagine we’ve got all sorts of problems. Too much information. I should have mentioned that I am very breathless going up hill. I do a lot of walks with my local ramblers ( up to 5 miles ) I’m beginning to feel very tired after a 5 mile walk but am managing at the moment if it’s a flat walk. I really do struggle when it comes to ascents. The consultant seemed pleased when I told him some of my walks were uphill.
Pretty typical here. I probably wouldn't have been offered a cardioversion if I hadn't paid to see a cardiologist privately as there was no cardiologist at our local hospital and hadn't been for 14 months. Luckily I moved to another area about 6 months after diagnosis and got to see a good cardio team with an EP but the start of my journey was a little bumpy. Your friend needs to tell her Doctor about her increasing breathlessness and tiredness and not get fobbed off with being told she should maybe expect this at her age! I had problems on bisoprolol and other rate control medication and eventually came off them - they made me feel far worse than the permanent AF and just on anticoagulants now. a Medication Review is needed from her consultant and it could be as simple as a change in dosage or medication could help.
Hi, I would definitely ask for a review and in particular mention the breathless issue.
After only a week on that beta blocker that you mentioned, I was so out of breath I couldn’t even walk on the flat for more than a few minutes without having to stop.
Persuading her to even question what a doctor has prescribed is the hardest part. Doctors know best and you never question what they prescribe. I'm not the only one trying to persuade her. We can only keep pestering her until she does something.
Your poor friend. The NHS is not in a great state as you may have heard and if you are quiet and long-suffering, you can easily be overlooked. I have to encourage my mum (74, on edoxaban and bispropol) to self-advocate if we aren't there during appointments as she is inclined to say, 'well that's just what happens when you get old'. Plus she doesn't like having to deal with doctors, understandably, and will just suffer in silence. I would echo what others have said: get onto them about the symptoms. If she has someone she can bring with her, all the better. This generation has paid all their lives for health care and should not be written off. The elderly are often casually viewed as 'a problem' to the NHS and it makes me very angry. Being old does not decrease your value. Slight rant here but hopefully you catch my drift
I'm a year older than your mother but I'm certainly not like that although my husband certainly is; never asks questions about diagnosis or medication. I don't think it's "awe" of doc tors, just lack of knowledge; something he's never had to think about. I've certainly never been treated as an "old person problem", maybe because I don't let them. This friend, however certainly does think it's just what happens with age. I don't think any of us will get through to her.
I hate the word "elderly". It should be confined to the bin with the word "chore". The NHS doesn't use the word "elderly" because it means different things to different people.
I don't count myself as old, just older. I am 78. I don't feel I'm being written off by the NHS. I get excellent, timely, service from my local medical centre, and when needed from hospital specialists
I may be 75 but am certainly not elderly. My body has aged but my brain's still 29 and happy to stay there. Someone said the other day that I was "old". I hit the roof.
Lucky you, Thomas45. Lucky you. Perhaps you'd prefer aged. Like cheese.
No I don't like any label. I am 78 with various medical conditions. I'm also alert enough to have developed a website about the village I live in, at https ://thornton BD13.uk. Which gives my full name. Thomas is my second Christian name.
Really? I thought it was Thomas45!
Any idea why I keep getting your replies to someone else? The email subject line says you replied to me. You obviously didn't.
Thomas is my middle name. I was named after my uncle Tom who was Named in Despatches in 1941. He was a merchant seaman working on a ship in the north Atlantic convoys. I was born in 1945, hence the 45.
It is quite the revelation that a username isn't the real name of a poster, and that numbers might refer to dates! Being female, I'm not named after my grandfather, who was born 1903, was parachuted over enemy lines in Burma. He had to kill a Japanese man in hand to hand combat, in a him-or-me situation. He trained Chinese rebels to fight the Japanese in Burma. Having grown up in northern India pre-independence, he spoke Urdu, but I was always most interested in his Cantonese phrase book. Presumably he got hold of that as a training aid. However like many of his generation, he didn't go on about this part of his life at all. Preferring to blend into a fairly anonymous life as a bank clerk in England, it's the children and grandchildren of such that wear these stories like feathers in their caps. He, and my other grandparents would've though that unwise and not in good taste.