Update on the AF journey…: Hi all... - Atrial Fibrillati...

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Update on the AF journey…

patience12 profile image
24 Replies

Hi all,

This isn’t so much a question but thought I’d post the ongoing journey…Be interested in what others think anyway.

So AF started 22nd July ( or thereabouts). I started flecainide 50mg bd ( twice a day 😉) on 15th August and after 3 days on it on 18th I went back into sinus rhythm.

Meantime I had an echocardiogram via NHS ( actually quicker than private!).

Last week managed to see my cardiologist. This is a different one to last time ( due to scheduling and also I saw this one 3 years ago). I was expecting to be scheduled for an ablation per the other cardiologists discussion.

However, this one has now recommended staying on flecainide long term. Said as I’m in sinus rhythm, why risk the side effects? Especially risk of stroke. If I can’t stand flecainide long term then rethink. Going up to 100mg bd as apparently 50 mg bd is ‘sub therapeutic’ dose.

Think echocardiogram all ok or mostly . Think there was slight enlargement of atrium,but nothing major . ( he said I am candidate for ablation if wanted/ required).

Also …. At the end of consult he said do homework on PVI ( pulmonary vein isolation). Then research link between obesity and AF. Said IF I can get BMI down and IF no AF recurrence after 2 years and many other IFs… then would look at me being clear of meds!

No Xarelto any more from last week . Said my chad vasc score is 1 so essentially same as risk of major internal bleed hence no medical benefit to being on it.

So flecainide and bisoprolol it is. Review in 3 months.

. Wasn’t expecting that as I thought it would be straight into an ablation and mentally prepared myself for that conversation!

I’m content with this approach, at least for now. Guess got to see how it goes .

Has anyone else had this approach? I know we’re all different. Interesting how the journey and advice has changed down the line!

Off to research papers on obesity/AF . If anyone has a link I’d be grateful. Thanks for reading this far! 🙏

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CDreamer profile image
CDreamer

ncbi.nlm.nih.gov/pmc/articl...

It’s a review of various studies - quoting from various so you should be able to follow up.

There is a LOT of research into the affects of being over weight and this review will highlight the risks and benefits of getting down to a recommended weight. Having said all that, eating and drinking well and what you eat and drink is as important. Many people have reduced their AF burden and some AF has resolved purely through Lifestyle changes and I would strongly recommend the books by Dr Chattergee - 4 Pillars of Health and look at the Doctor’s Kitchen - Dr Rupi developed AF whilst training to be a doctor and worked out that ultra processed foods are the No1 cause so worked out what foods actually help and he explains in all his books and on his app WHY. thedoctorskitchen.com/

I would also so suggest reading The AFib cure co-authored by Dr John Day who also writes an excellent blog - in an nutshell here is how to help yourself drjohnday.com/get-rid-atria...

I would say it’s not foolproof and many people do all the things suggested and still have AF BUT when they then go ahead and have an ablation there is a much higher chance of achieving long lasting NSR.

The incentive for following this type of programme I would say is simply because these meds are toxic long term, they may keep you out of AF but they will affect other organs long term so the fewer you take for the least amount of time the better, if for nothing else than shifting weight whilst on these meds is really hard.

Hope some of that helps your research - don’t forget to also look at the AFA website and read all of their information on treatments.

Go well - best wishes CD

Popepaul profile image
Popepaul in reply to CDreamer

A very helpful reply from C Dreamer with some good links.

Murdy1 profile image
Murdy1 in reply to CDreamer

Yes Sir.. eee, CD. Thanks for all that good advice. Tom

OldJane profile image
OldJane

We are all different- is your BMI high? Guess that could compromise an ablation. Wonder why they focused on stroke as a risk for you?

patience12 profile image
patience12 in reply to OldJane

I’m not sure . I took it more that the medication has risks too. Xarelto carries risk of major bleeds in brain and stomach ( he said) . A 1% risk. Same as my risk of stroke on Xarelto 1% therefore no medical benefit to taking it.🤷‍♀️ .

OldJane profile image
OldJane in reply to patience12

Interesting that they focussed on stroke risk for ablation. My advice was the opposite although I had a higher CHAD score. So Apixaban and ablation. That the rhythm drugs needed had risks and early ablation may be more successful.

patience12 profile image
patience12 in reply to OldJane

Yea I think the answer is: both are right. He said once I hit 65 my CHAD-VASC would be 2 and then it’s a different conversation. Definitely on anti-coagulation meds then.

He gave the impression ( and not absolute guarantee) that sorting out weight would lead to a massive improvement in outcome for the ablation.

I’m reviewing with him in 3 months anyway so if the drugs become unbearable then ablation is then the option.

Re: early ablation: yes . Again correct but that’s if I’m AF. He said he has seen people who stay in AF, don’t want ablation ( or drugs or maybe drugs don’t work) and go away for say 2 years , where they’re in AF for that whole time. Then the AF gets worse ( in these cases) so they come back and he said outcome very much worse due to ongoing remodelling of the heart by AF during that time. Heart then ‘likes’ AF. So - my understanding anyway- as long as not in AF then no remodelling of the heart and not losing anything with holding off on ablation whilst review things.. He’s happy to do it if I then say I can’t hack the drugs. Tbh I don’t t like idea of long term drugs. But …. 🤷‍♀️. I will see how it goes over the next 3 months.

secondtry profile image
secondtry

I would say you have had excellent advice and very similar to my successful treatment.

Doing your research, I would read up on sleep apnoea first in case this is relevant and also breathing through the nose (ref: James Nestor & Patrick McKeown both on YouTube). Easy to implement and no side effects is a Breathright nasal strip at night; I've used them for years.

Don't get too hung up on one cause of AF rather look at steadily improving a wide range of lifestyle choices.

Ppiman profile image
Ppiman

The trouble with AF is that, even if you hadn't started the flecainide, you might still have gone into sinus rhythm and have stayed in it. My AF and general heart troubles (palpitations, mainly) wax and wane seemingly at will. I haven't had any AF since last March, for example, although I was started on daily bisoprolol (1.25mg) back then prior to a small operation. Has the beta-blocker kept me AF free? Who knows?

I have found it quite difficult to research the likely causes of AF, and the link between, say, your being overweight and your having AF won't be easy to prove. Of the six people I know well with AF, including myself, none are what would be deemed much overweight and neither of the two very overweight people I know have AF or any other heart trouble (although both do suffer with severe joint and mobility issues).

A far clearer link seems to exist between raised blood pressure and AF and, indeed, many other eventually very severe cardiovascular, heart and kidney diseases and, of course, the dreaded stroke. Also, there's no question of the link between BP and weight, as well as that between diabetes and weight.

In terms of losing weight, my wife's late aunt ran a very successful local slimming club for many years. She struggled herself with her weight and had naturally larger legs, for some reason, as did her mother, which made her look larger than she was. Her mantra back then was that reduced portions of what is normally eaten each day were the way to succeed with weight loss, slowly but surely and permanently, in the same way that larger portions than the body truly needed were the way the weight crept on. This was a slow but assured route to success, she found, rather than the inbuilt failure of any kind of specialised diet.

Recent evidence seems to have proven her correct. She also maintained that, whilst exercise was good for the health and especially for the heart and circulation, it was a poor way to lose weight; and this, again, is now accepted. The way slim people stay slim, apparently, is not down to their metabolism being "quicker" but by their stomachs not calling for food so often and their feeling satisfied with smaller portion. She maintained that the body could be trained to accept gradually smaller portions and that these always led to reduced weight.

Steve

BobD profile image
BobDVolunteer in reply to Ppiman

Look at any photos of people during WWll when strict rationing was in force and you will see few obese people apart maybe from the odd farmer's wife.

Ppiman profile image
Ppiman in reply to BobD

I read once that diabetes all-but disappeared during those WW2 ration years, too, Bob.

BobD profile image
BobDVolunteer in reply to Ppiman

I remember the imediate post war years (45-47) were actually worse and sweets came off ration much much later.

Autumn_Leaves profile image
Autumn_Leaves in reply to Ppiman

The weight thing is very much a conundrum. Our genetics play a role especially with regard to where we store fat although that’s not to downplay the impact of lifestyle. The feedback mechanism of leptin being able to regulate our food intake as signalled by our body fat stores is blunted in people with obesity so are more inclined to seek food when their body fat stores are replete. It’s a hugely complicated process.

I have a low body weight so I can’t blame my weight for AF. I do love my food and I love big portions but I follow a plant based diet so much of it is less energy dense. I also make sure I have three full meals a day, all of approximately equal kcal and make sure it’s balanced for protein, healthy fats, complex carbs and fibre. I don’t feel hungry at all between meals. I have no inclination to eat at those in between times. So I’m not an advocate of smaller portions at all! If anything, it’s the bad habits that some people develop that do the damage. I see it with my husband, the biscuits and the bottles of beer and the Bakewell tarts he scoffs at work, etc. He’s not overweight but he’s an older man and it all accumulates around the middle. But what can I do? 🤷🏻‍♀️

Ppiman profile image
Ppiman in reply to Autumn_Leaves

I was quite surprised a while back to read that we are the snack kingdom of the world, eating in between meals like no other nation (except of course, the USA).

For me the secret is to cut down portions a little as soon as the weight creeps on.

As you rightly say, it’s a very complex issue but taking in more calories than we use in energy must, essentially, be the root of it.

Steve

Autumn_Leaves profile image
Autumn_Leaves in reply to Ppiman

People eat a lot of additional kcal from snacking and a lot of products sold as snack foods aren’t particularly healthy either. That’s why I’m an advocate of eating enough at mealtimes because the appetite for snacking just won’t be there. People have these very skimpy unbalanced breakfasts and then they have something like a sandwich for lunch, so how can that possibly be enough for the body to run efficiently? People will be driven to snack if they don’t fuel themselves adequately. Unfortunately it takes time, effort and planning for people to eat balanced meals and somehow make it all fit in with their working week, doing meal prep every Sunday and preparing a lunchbox every morning. I can understand why people just want cereal for breakfast and a sandwich for lunch, because it’s very easy. So the snacking habit can come out of that. It’s everywhere and it’s convenient. I see it with my husband and it’s not good for his waistline.

Ppiman profile image
Ppiman in reply to Autumn_Leaves

I find that I can’t eat a big meal and then “last through” as I’m hungry in just the same time whatever I eat. It’s very odd. It has to be three regular but relatively small portions a day for me and then, if I’m hungry before bed, a small supper.

My son has long been a believer in eating as much “unprocessed” type food as he can and we are broadly similar. We’re both lucky in having wives who enjoy preparing meals from raw ingredients.

Steve

Autumn_Leaves profile image
Autumn_Leaves in reply to Ppiman

I wish I had a wife!

Ppiman profile image
Ppiman in reply to Autumn_Leaves

Yes, even the most curmudgeonly bachelor would have to admit that they do have their uses. 😳

But you’ve got youth on your side. I wish I was your age!

Steve

Autumn_Leaves profile image
Autumn_Leaves in reply to Ppiman

Youth?! That was a long time ago! 🤣

My husband is fairly adept in the kitchen but he’s exhausted by the time he gets in from work. He doesn’t have youth on his side any more either 😂

Belle11 profile image
Belle11

A quick Google search for "atrial fibrillation and obesity" brought this study up as first result, with the snappy title "Obesity and atrial fibrillation: a narrative review from arrhythmogenic mechanisms to clinical significance" cardiab.biomedcentral.com/a...

It concludes "Adipose tissue leads to left atrial enlargement and electrical remodeling through various mechanisms, including inflammation and oxidative stress. This induces AF development and promotes type switching. Weight loss reduces AF development and is associated with a reduced rate of AF recurrence after ablation."

However, as someone with plenty of adipose tissue that I struggle to lose, I've managed to stay in remission for over 3 1/2 years so far, with bisoprolol, rivaroxaban, and attention to what I eat (Dr John Day's book is usefuyl, as others have said.

Ppiman profile image
Ppiman in reply to Belle11

Well done, and thanks for a helpful (and lovely) post!

Steve

Belle11 profile image
Belle11

The study conclusions go on to say "from the perspective of metabolism, obesity is categorized into metabolically healthy and unhealthy. Even if metabolically healthy obese patients have a high BMI, the AF risk is low; thus, using BMI alone to identify obesity is not accurate. In addition, adipose tissue is classified as white, beige, and brown fats, which are distributed throughout the body and function differently. Do these different changes in fat correspond to different AF risks?" So lots of unknowns - and it looks as if we can influence risk with lifestyle.

Autumn_Leaves profile image
Autumn_Leaves

I think it’s important to gain perspective on the topic of AF and ablation. For many people, it’s not a one-and-done lifelong cure. As we can see from the stories here, there are people who have had three ablations and are now living with permanent AF. There are people who have had three ablations before having pace and ablate. Many people need more than one ablation to stay mostly in sinus rhythm, but there’s no guarantee how long that will last. So I think you need to be aware of all these realities before you consider surgery.

There may well be many people who have successful ablations after one or more attempts, but any kind of surgery is not without risk, and more so when it’s a procedure on your heart. It may a small risk but it’s a real one. Like all procedures, you have to weigh up the risks versus benefits. If your AF burden is small at the moment, the risks of surgery may outweigh the benefits.

It’s impossible to know why any one individual develops AF. Almost all conditions are multi factorial and what applies to one person may not be relevant to another. Weight loss may help your AF but I have a low-normal BMI so for me it’s not even an option. Regardless of whether it helps your AF, excess weight, especially abdominal adiposity is not good for your general health and puts you at greater risk for other conditions. Just because you have AF doesn’t mean that you are not at risk from developing another condition, especially as we get older.

The best way to make changes is by just taking one small step, every day, consistently. You don’t need to upend your diet all at once or make big sweeping changes to your lifestyle. Start by changing just one little thing. Lots of little changes add up, so perhaps observe all these little habits and work on them one at a time.

Strawberryfields1 profile image
Strawberryfields1 in reply to Autumn_Leaves

My electrophysiologist mentioned that an ablation could be down the road. I was diagnosed in April and no episodes than the one in the hospital. I am on Eliquis and Flecainide lowest dose 2 times per day.

My cardiologist takes a more pragmatic approach and doesnt ever reccomend an ablation until it is absoultwly needed. She does not believe in the theory that if you are an early afiber you should rush into an ablation because it might be more successful. She doesn't like he risks that ablation can pose. I like the pragmatic approach much better, thoughts?

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