Small steps on the journey back to NSR

[Rainfern]

OK, I'm probably going to sound hopelessly optimistic here, but yesterday evening I met my EP Cardiologist who was giving a talk and update on AF and it cheered me up immensely. We hadn't met, but the technician who fitted the monitor told me to "make myself known". So I did. For the first time since I developed AF I feel confident that I will get some help, hopefully an ablation, maybe even pulsed field ablation, and that I'll be in expert hands.

One of the updates he spoke about was the emphasis now being placed on early rhythm control. This is due to risk factors increasing over time and to greatly improved monitoring of PAF with new tech. Also progress being made treating persistent AF. So that sounds more like the US model where ablations are offered sooner rather than later. Maybe we have more cardiologists trained up for the job now in UK?

Another update was the extra focus on various lifestyle and risk factors - obesity, exercise, healthy diet etc. My favourite was the research that shows drinking 3 cups of caffeinated coffee a day is better for AF than not drinking any coffee at all, and better than decaf!

Finally, a word of warning - omega 3 supplements are out apparently. Omega 3 is being shown to trigger and aggravate AF according to the research he presented. But he said its fine I can go on munching flax and pumpkin seeds and eating oily fish!

[BobD Volunteer]

A few years ago it was explained to me that "facts" had a finite life. For eample when younger I understood that Pluto was a planet but no apparently it is an asteroid or something similar.

Never has this been more true than with treatment of AF although the one constant so far has been life style changes. That and self help and attitude. Sadly the world and his brother in law all expect somebody to wave a magic wand and cure them.. LOl 😁

[Rainfern in reply to BobD]

I agree Bob - a lot of research is presented day after day in the media like it's a magic formula. As for AF as far as I can see there's no one size fits all. I celebrated my birthday in town today with a girt big mug of coffee and nearly passed out!

[estesbubba]

A lot of the latest research shows coffee isn't a problem, but can be if you drink it later in the day because it can affect sleep quality which can be a trigger.

I stopped drinking alcohol 2 years ago since since just 2 drinks increases your chances of getting AFib that night 3.5 times! I found out that there are a lot of great NA beers.

[Rainfern in reply to estesbubba]

Yes, I discovered my milkman delivers excellent artisan NA beer! I've not drunk alcohol since the Afib started and I don't miss it.

[DawnTX in reply to estesbubba]

I never had anyone tell me not to have a drink and I wasn’t concerned because I am not a drinker. I did totally forget when we go for Mexican food. I love my sangria by the time we walked out to the parking lot, I was ready to fall down not from the alcohol, but from my a fib. It took me a second time to realize it had to be the alcohol even as light as it is along with a heavier meal and of course, picking on salsa and freshly baked chips. A heavy meal can also trigger it as I discovered at the Japanese restaurant three doors down from our favorite Mexican. No alcohol there, but just really good food. There are no mini portions here in Texas lol we have to be our own keeper and pay attention when we develop an episode and try to see what you did different that may have triggered it

As far as coffee goes I love flavored coffee. It’s my dessert. I don’t drink a pot at most. I would have a 2nd cup on a cold day. My doctor gave me the go ahead and obviously if I found it bothered me that I won’t drink it. I have not had a problem. Of course drinking it late in the day whether you have a fib or not is going to keep you from sleeping if you are like most people. I never understood why when people visit in the evening they would be offered coffee and a nice dessert. Now I think back at how many people couldn’t sleep all night when they got home lol.

I actually find I feel better when I have my morning coffee

[secondtry]

Good points. Yes I would agree a cup of ordinary coffee before 1pm is probably good in strengthening the heart beat. However not wishing to rock the QOL boat, personally I have not gone back to it 🤔.

[Rainfern in reply to secondtry]

After my experience today (see above) I'm going back to decaf!

[secondtry in reply to Rainfern]

Best to stick to the more natural method of decay, as the chemical version is likely to cause more trouble.

[Afibflipper]

Caffeinated coffee sends my heart into a bit of a frenzy! I can often tell about an hour or so later that I drank the wrong one

I was told by the pharmacist that Omega 3 supplements should not be taken with anticoagulants as it increases the risk of bleeding

[Achant1 in reply to Afibflipper]

Me too, coffee and any caffeine off the table for me.

[DawnTX]

There is nothing wrong with being optimistic in fact, if you are not, I believe you have a better chance of failing. The mind soul and body connection are very strong. I have an EP now, who has very different views than the others I have known. I like the way he thinks. He is very passionate about us having quality of life and not repeating failures, such as cardioversions, etc. we have to remember, except for a few people most things are temporary to keep us in. NSR. There is no cure yet anyway. I have come to believe repeating the things being done cannot really be good for the heart whether it is ablations meds, etc.. how good can shocks to the heart be when they are done again and again? Right from the beginning my new EP told me he would not do another ablation because of the scarring. I have had three previous because of the extended time with a continual tachycardia heart rate going from a fib to a typical flutter and back again. He said my heart is exhausted and so am I he recognized that. His goal is to give me quality of life he will cut out the middleman of big Pharma, etc. I am having a pacemaker put in Monday , the rest of the procedure will be two weeks after that

You could talk to eight different doctors and get a different opinions. It’s obvious they don’t have answers yet for a fib. Meanwhile, here we are being subjected to side effect after side effects of medication and more.

I was so against a pacemaker a month ago I’m still not thrilled. It scares me to have a foreign object telling my heart what to do. But these are not brand new and a shot at quality of life one more time is really important to me so here I go. 😊

[Rainfern in reply to DawnTX]

Hi Dawn, it sounds like you're finding a very positive route ahead and I wish you success and health for the future. Your words are inspiring for someone like me at the start of the AF journey. Luckily although a pacemaker controls the beat, it does not control our capacity to love life nor for that matter to enjoy sangria! Good luck!

[doodle68]

It's good to be optimistic but unwise for Doctors to 'sell' treatments that can't be fulfilled anytime soon because of the dire state of the NHS.

I did all the 'lifestyle changes' starting 6 years ago eating a near perfect diet (following in the steps of Tim Spector 30 different plant based foods a week) lost 1.5 stone, no alcohol, daily excercise, a good sleep pattern,avoiding stress and still AF has progressed to lasting many days with little time in NSR .

I am now on a waiting list for an ablation some time next autumn with a bit of luck. I am not expecting a cure but a little temporary relief and a reduction in debilitating symptoms would be nice.

[Rainfern in reply to doodle68]

Yes, and I'm afraid the "selling" goes hand in hand with the breakdown of the NHS. It's so sad and unnecessary, but lots of people making lots of money out of all the privatisation going on and what do they care! The government let the nationalised railways run down in the same way before privatisation. The talk I mentioned above was sponsored by Nuffield. I'm not awfully optimistic doodle, but allow myself the odd flight of fancy! 🤣

[Rainfern in reply to doodle68]

PS Well done with the lifestyle changes, and good luck with the ablation!

[doodle68 in reply to Rainfern]

Thank you Rainfern , sorry to sound sceptical . I started my AF official journey 6 years ago and having waited 6 months for a clinic appointment to be prescribed medication and when no advice was forthcoming, I did my own research and found the LEGACY study and determined to beat AF with minimal intervention followed lifestyle changes to the letter. I would like to think I may have delayed the progression of my AF but as Bob always rightly says 'AF begets AF' and it progressed slowly at first then rapidly recently. LEGACY was done in 2015 so not really new, Doctors are just catching up with the recommendations .

I had to use my savings to pay to see an EP to discuss medication because COVID cancelled my clinic appointment, then I paid for an Echocardiogram which was needed before I could be prescribed Flecainide because there was a 6 month wait for an NHS Echo and I had already waited 10 months since requesting a clinic appointment to discuss medication and time was running out as my episodes of P-AF got closer together and lasted longer. This is privatisation by the back door, if you can't pay you may have a long wait .

In the end the Flecainide didn't work, I think it might have done had I tried it as a PIP when my episodes of P-AF were infrequent .

Knowing what I know now, I would have taken a chance on an Ablation and requested one pre COVID before waiting times became even worse and my condition drastically reduced my quality of life.

[Rainfern]

Thank you doodle for sharing your experience and apologies for not responding sooner. No harm in being sceptical - it helps others understand what we're up against! Sorry to hear your experience was so tough. Afib involves such a loss, however much we adjust there's no getting away from the fact it can steal some fundamental experiences of health and wellbeing. It sounds like you did all you could with the knowledge and resources available at the time and I wish you all success with forthcoming ablation.