I started with AF 5 years ago. I was given edoxaban and bisoprolol to manage the episodes, which did. My episodes were infrequent until August this year when I went into AF and have remained in it since. I don’t have a cardiologist but have been referred to the cardiology department at the Royal Liverpool Hospital.
It has come as a bit of a shock and the only advice I’ve been given is to avoid stress.
Are there any guidelines that members on this group can give me?
Hi, I had heart attack in April , resting heart rate was highish at around 130 and wouldn't come down but normal rhythm. During the summer GP adjusted some meds (without actually seeing me) as I was constantly knackered with home monitoring showing BP around 100/60 and resting heart rate around 40. However mid sept I had ECG and AF diagnosed (permanent I think as I've bought a kardia mobile and always says "possible AF".)Like you , referred to cardiology, my cardio rehab nurse has told me 8 months wait as I'm down as "non urgent". So how do we avoid stress...
I'm actually thinking of booking a private consultation to at least get a better understanding of options , my main issues are fatigue and anxiety , my heart rate is still in the 40's and I've been waiting 6 months for the 24 hour holter to get some confirmed readings. All very frustrating, good luck with the referral..
Go to our main website (AF Association) and read till you drop and then ask us anything you don't understand. One thing you must understand is that "permanent AF "has no medical meaning. It is merely an agrement between patient and doctors to accept AF and not attempt to obtain NSR again. You are not permanent!
Correct, although it still has relevance in that ablation is easier when paroxysmal compared to "permanent".
Here is all the reading material BobD refers to
heartrhythmalliance.org/afa...
As per the AF Fact File, you are currently Persistent not Permanent. My advice would be to push for an EP consultation asap.
Best wishes
If they have never seen a cardiolgist and never been offered DCCV (cardioversion) they are a long way from worrying about that.
A long way from worrying about what?
permanent diagnosis.
You've been in a fib for around two months so technically it's "persistent afib". Right now you have a very good chance for successful treatment if you convert to normal rhythm soon. If you wait too long to convert, your condition can change to long-term persistent where are the heart starts to remodel with scarring (fibrosis).
Your goal, therefore is to get back into normal rhythm as soon as possible. This may be through electrical cardioversion, antiarrhythmic.medications, ablation or a combination.
For this to move along quickly, you need to see a cardiologist that specializes in atrial fibrillation, called an electrophysiologist (ep). If you can afford to private, the process can be a lot quicker. If not, try and get to see an ep ASAP and let them know you prefer to be normal rhythm and not to continue as you are.
If your ep does not agree, find one who will convert you to normal rhythm. Because again, if you wait too long, it may become too difficult to convert and you will be stuck where you are now.
Yes read as much as you can, including emerging study data.
Here's a current article from the leading journal, Frontiers "Early rhythm control vs. rate control in atrial fibrillation: A systematic review and meta-analysis"
It concludes In this meta-analysis, early rhythm therapy was linked to a lower risk of all-cause mortality, cardiovascular mortality, stroke, and heart failure hospitalization
And not to mention better quality of life that many of us feel when we are in normal rhythm versus atrial fibrillation.
Jim
Thank you mjames1. Your advice is in line with my thinking. I think I will try to book an ep for the consultation and then see what happens.
Look around, but from my research , I think any of the EP's at Royal Papworth are good, as well as Professor Richard Schilling at St Barts.
Should it come down to ablation , Royal Papworth is primarily doing PFA (pulse field ablation) which many think a more promising ablation technology. Not sure if Schlling switched over yet.
Jim
Glenfield in Leicester are now doing pulse field ablations but my EP says it has no better results that RF
Is your EP only taking about success rate in treating AF or is that in all aspects including safety/complications, procedure duration etc?
I think just success rates. I do believe that pulse field has less risk of complications but he never touched on that. It was a conversation we had when I was being followed up after my ablation
Same success rate with a lower risk of complications sounds like a better option to me. All other things being equal, if/when I have an ablation, I will seek PFA
Me too if I am unfortunate enough to need another one. Not something I would like to go through again but on a positive note my AF seems to have gone into hiding, for now anyway, no episodes since January. 🙏🤞
I'm not looking forward to the prospect of having one but realise I'll probably need to have one at some stage. Fortunately my AF is currently well controlled with medication and infrequent episodes are very low burden and self terminating in hours.Hopefully your ablation gives you years or even permanent respite from AF.
Thank you ❤️Was the best decision I made even though I didn't think so at the time
One recommendation when looking for a private appointment. It is worth seeing if anyone at your local nhs hospital who specialises also does private work and seeing them. I did that for my cardiologist and after I had seen him when he wrote to gp he told him to refer me to his nhs clinic for future follow up. Still get the waits then for appointments but it worked well as I felt comfortable with him as my consultant
This sounds similar to my journey where paroxysmal had become AF all the time. Unfortunately the current wait times to go through the NHS process are such that by the time you get to an EP (plus the time to actually get an ablation/ cardioversion done) means any procedure has less chance of being effective if you are in AF all the time.
Great advice! I wish someone had told me this when I was diagnosed, it took me over a month to find out this was the best line of action. Then I lost 2 months on cardioversion because I had to appeal to Obundsman (insurance tried to play smart). Plus 1 month meds before the procedure. I had my first cardiovertion 5 months after diagnosis, if I could go back with what I know now I'd have just paid for it myself. Thankfully it worked anyway for me 🤞
I would book a private cardiologist appointment (if funds allow) and ask why you have not been given an anti-arrhythmia pill eg tried & tested Flecainide and what the appropriate daily dose should be; maybe in your case 200mgs (medium dose).
Many here suggest seeing an EP instead but my experience (I've seen two) is 'talk to a carpet salesman and you will buy a carpet' 😁. Your better option maybe to postpone an ablation for 5 years.
My EP advises the opposite, the best time for ablation is in the early stages of AF when it's paroxysmal. I had mine in March this year and so far 🤞no episodes. I used to get them 3 months apart lasting 36 hours, couldn't sustain that
Excellent & hopefully off the pills as well.
I wish!! Unfortunately my EP says he likes 'belt and braces' so not off them....yet...we will see at my next review in December 🤞we will come to that point but he did say I will be on apixaban for life as the AF can lurk around like the monster it is and I could have an episode I don't feel.
There are a lot of good EPs in Liverpool both at Liverpool Heart and Chest and The Royal If you want one from the Royal look on the Spire Liverpool website, that will tell you who the cardiologists are , what they specialise in and where they work . If you can afford it I would go. They may be able to transfer you to the NHS if they consider you urgent. Good luck
just want to say sorry this has happened and wish you well. Only you know whether there are areas of stress in your life that you can avoid, but I think it’s worth doing.
I think there's little advice to give, so I wouldn't worry. It would have been helpful f the NHS had treated you differently, though - seeing a doctor more quickly, for example, for you own reassurance. I hope your GP is a good one!
I often wonder whether my PAF isn't moving in the direction yours has taken. An elderly friend had the same experience very many years ago and he's been well throughout. That always encourages me. My son's colleague, now in his 70s is similar - after five ablations!
I think for the many sufferers the journey to persistent AF is the way of the condition. How do you feel with yours?
Steve
I was in your position, paroxysmal but had been put on ablation waiting list. It took 8 months, and then one month before I was due, paroxysmal turned into persistent. Funnily enough, the ongoing episode was less bothersome than before, but I was concerned it would jeopardise the planned ablation, I had read the success rate was much lower. Well, the EP didn't flinch and everything went to plan. No complaints. The EP does not want to change any meds, little room for manoeuvre, so relying on sensible lifestyle, low alcohol, good diet, and ablations and cardioversions in case of need. While it lasts, it's really good to be in sinus, that in itself keeps the old stress levels down. Read all the AFA stuff and get to see an EP soon as you can.
Live as well as you can! Exercise as well as you can to keep to your heart healthy, eat a good diet with plenty of veg, and make sure you get plenty of sleep as this is the time a lot of maintenance work is done by the body. Lots of people live with AF with very little management needed, but you need to look after yourself.
Do not worry! First of all: you can live to be 100 with AF. My mother almost did, she was 94 when she died of something completely unrelated.
Secondly: provided your resting heart rate is kept within acceptable limits (between 60 and 100 bpm) and you take some form of anti-coagulation medication, you’ll be fine.
Thirdly: the longer you are in AF, the less you feel it. It is common knowledge that many people in permanent AF prefer that situation to their previous paroxysmal AF, because they are a lot less symptomatic and they don’t have to ‘watch out for triggers’ anymore.
And finally: AF is NOT always progressive. In fact, it can be very sporadic, meaning that it can come and go unexpectedly, and even stay away for long periods.
So, cheer up!
Try adding magnesium taurate as recommended by prof Sanjay Gupta and co enzyme q10 to your supplements. Obviously check with pharmacy or gp first. They might help. Stay really well hydrated. Avoid alcohol and simple Carbs, especially sugar. These just might help. Buy the AFib cure by Dr John day and Dr Jared bunch available from Amazon and elsewhere. There is no cure, but they use the word "cure" in the same way it's used in cancer treatment, five year AFib free in their opinion is cured. It's the information in it that's great. Make a private appointment with an EP, should cost you about 200. Just check beforehand that he can transfer you back to NHS for treatment unless you have insurance.
There is loads of information on Google scholar about AFib and inflammation. Q10 reduces inflammation.
I had paroxysmal AF for twenty years or more before it became permanent. I've written before how relieved I was to no longer worry about whether I would go into AF at times of high activity and then to worry about how long the condition would last before returing to normal sinus rhythm. I can truly say that I now ignore the condition in a way I never could when it was intermittent. Maybe I'm a little slower up the hills and a little more out of breath climbing the stairs, but, in all other respects, can live a normal life - or normal for an octogenarian, anyway - and am perfectly happy to do so. I take drugs to control the rate rather the rhythm of my heart and can match my similarly ancient peers on my bike or the golf course without difficulty.
The same thing has happened to me my cardiologist said that if I can live with the symptoms of the permanent AF all they need to do is to control the heart rate and bring it below a certain level so just to change my blood pressure medication
Hi Alf, you don't mention if you are symptomatic , I think it makes a difference if you are not.
If you are symptomatic and your episodes progress to very frequent or persistent I would recommend asking to see an Electrophysiologist and requesting an ablation.
I progressed from symptomatic P-AF to persistent then constant symptomatic AF for 8 months with a poor quality of life and then i had an ablation , it was only partially successful but with the help of flecainide (which didn't work previously ) I have been AF and PAC free since February. If you don't have symptoms then I would accept the AF and an anticoagulant and betablocker.
AF is only described as "permanent" when a decision has been made not to attempt to get a person back into normal rhythm. You're in what's known as "persistent" AF, and it should be possible to be offered drug treatment or a cardioversion by a cardiologist, to attempt to return you to NSR (normal sinus rhythm). This may or may not give you a long respite from AF.
I've had 2 cardioversions - the first kept me in NSR for 3 years 8 months, and 6+ months after my second I'm still doing fine. Hope you can get to see a cardiologist before too long to discuss the options.
If you're overweight and not careful what you eat, try a Mediterranean type diet, no sugar or sweeteners at all. Might work.
I would ask to be referred to the Liverpool Heart and Chest (old Broadgreen Hospital) rather that the RL as they have the best EP’s in the Liverpool area. You could travel, but more convenient local and there some excellent EP’s at the LH&C under Prof Gupta.
"Permanent AF"
PAF to permanent AF
Paroxysmal AF.
Permanent AF ?
Permanent AF 
