My yearly visit to the Arrhythmia Cli... - Atrial Fibrillati...

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My yearly visit to the Arrhythmia Clinic

doodle68 profile image
46 Replies

Last Monday I visited the arrhythmia clinic , my last visit for the time being, I have been officially signed off. I will post the details for anyone who like myself is coping with P-AF with the help of medication and lifestyle changes and does not wish to have an ablation to try to improve the quality of their life at this time (there is no guaranteed 'cure' for AF)

I had a long chat with the Arrhythmia Nurse who is part of the AF team, the nurse triages the clinic and liaises with the Cardiologist (who is also an EP) I guess they get to see more people this way and I understand that and don't feel I have missed out not seeing 'the main man'.

I discussed the frequency and duration of my P-AF which for over the last year has been stable at one episode a month lasting between 8-15 hours, the dietary and exercise regime I am using in the hope of preventing the progression of P-AF and any other changes to my health .

My main concern was that by refusing an ablation the episodes of AF could be damaging my heart. I was told that in this instance as the echocardiogram had revealed no significant problems with my heart, I was taking an anticoagulant, the episodes were not too frequent or long, I had lost weight and made lifestyle changes, my P-AF seems stable, I should be ok to carry on as I am .

Had I decided on an ablation there is a 12 month waiting list locally for a first ablation, subsequent procedures have to be carried out in another hospital over 100 miles away.

I will now continue having 6 monthly blood test with my GP to check the anticoagulant is not doing any harm . If my condition changes I can be fast tracked back to the arrhythmia clinic.

We AFers vary greatly in our AF experience and that includes tolerance of medication, frequency of episodes, comorbidities, existing heart conditions and there isn't a 'one size fits all' when it comes to how we each deal with our condition and we can only listen , learn and decide the best course of action for ourselves as individuals :-)

I have decided on balance this is the best plan for me. Although unpleasant I can cope with the episodes of P-AF with the help of breathing/relaxation techniques, my quality of life is ok and I really don't want to go down the road of what could be frequent procedures for a temporary small improvement to my QOL and no guarantee of a permanent fix for my P-AF .

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doodle68
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46 Replies
jeanjeannie50 profile image
jeanjeannie50

Sounds like a wise choice to me doodle.

AF is talked about a lot more these days, but when I had my first one 8 years ago I knew nothing about it whatsoever. I really thought that my ablation was going to be an immediate cure. It would be done and I would sail off into the sunset and lead an AF free life for ever! After 3 ablations I still have AF, agreed my attacks since my third one are less frequent and not so severe, but I really wish I'd known how the change to a healthier diet etc. could have helped. Back then I honestly thought an ablation was the easy choice.

For me artificial sweeteners were a definite trigger, but it was a long time before I discovered that.

Jean

doodle68 profile image
doodle68 in reply to jeanjeannie50

Hi Jean :-) I hope you are coping well just now.

We seem to get few people who make the choice of accepting the quality of life they have and living with P-A with the help of medication and lifestyle changes.

I don't wish to influence anyone in any way I think it may help some people who have done something similar but have not spoken about it . Sometimes it can feel like the wrong thing to mention on here when so many people are eager to have an ablation not just to improve their quality of life but in the hope of preventing the progression of AF.

Ablations are a wonderful thing for many but not me , I am a 'bird in the hand' kind of person and happy to accept less than perfect when it comes to AF, life isn't bad so I will make the best of it as it is now while trying to help myself by making changes to my lifestyle.

My GP is not in favour of instant ablations for everyone, I won't quote her it may upset some people but I have her support in my decision.

jeanjeannie50 profile image
jeanjeannie50 in reply to doodle68

This forum appears to be very pro ablation. I guess we all speak as we find. If I'd been cured I would be singing it's praises too. Instead, while once hospitalised with AF after having had two ablations, I was told that my heart had probably become a bit stiff functioning because of the scar tissue inside caused by them. I do try to keep an open mind with regard to their success.

I understand and respect the reasons why some may be reluctant to opt for an ablation doodle, but in your case I would have been tempted to accept the offer of an ablation and use the 12 months to determine what might be best for you next summer and cancel if you still held the same view then.

Whilst there may be no reason to believe that your condition will change within in this period, it might and then you will have to wait another 12 months (probably longer by then) before an ablation becomes available.

Notwithstanding any of that, hope all stays well for you......

doodle68 profile image
doodle68 in reply to

Hi Flapjack :-) I was originally offered the abaltion a year ago last May .

I was aware the local hospital had only just started to carry out the procedure so the team had not gained a experience as a group, also that any subsequent procedures could not be done locally but at a hospital over 100 miles away. Had I provisionally accepted then I would have already decline by now had a date arisen.

I am glad I declined, someone I know had a failed ablation locally and had to travel on numerous forms of transport to a distant hospital for a pre opp assessment for a second ablation then was never called for the ablation and this happened twice. I would have been a gibbering wreck by now had that happened to me.

Thank you anyway for the suggestion :-) and I am working hard to stay well.

I hope you are well too...

in reply to doodle68

Cannot and will not argue with the logic doodle coz I’d lose....😉.

All the best......

dmjtanner profile image
dmjtanner in reply to

I don’t understand why the wait would be 12 months? That’s what I am concerned about with a one payer system if that should happen in the US. Is there not enough physicians?

Finvola profile image
Finvola

A sensible package of plans and strategies for coping Doodle. You are so right that we can do so much to help ourselves in the ways you describe - which is what I have tried to do too.

My AF is currently controlled by Flecainide and your last sentence sums up my views exactly. Long may things remain stable.

doodle68 profile image
doodle68 in reply to Finvola

Hi Finvola :-) thank you. I am pleased to hear you are coping well...

Flecainide (initially given under supervison) was mentioned if I get to the stage when I feel I need a bit more help.

Finvola profile image
Finvola in reply to doodle68

That sounds great and gives you choices and ways forward if needed.

Tako2009 profile image
Tako2009

Sounds sensible to me too - thank you for posting this - it is reassuring to know that there are others on the forum who have decided not to go down the ablation path to deal with their AF. My EP has discharged me from his clinic as he feels my QOL would not be improved by the procedure and is happy that I am able to manage my AF with a combination of medication and the diet and lifestyle changes I have made. We both recognise that this could change in the future so I can be fast-track referred back to the arrhythmia clinic if things change.

For me the AF diagnosis and fear of ablation actually forced me to take a long hard look at my lifestyle and to make some fundamental changes to improve my physical and mental well-being and of course to protect my heart health. The improvement plan is still a ‘work in progress ‘ but I am getting there and I believe has a positive effect on my AF.

And, who knows, one day I may need to consider an ablation, but for now, it’s not the best option for me.

wilsond profile image
wilsond in reply to Tako2009

Exactly my thought, I could have written this reply myself!

Mrsvemb profile image
Mrsvemb in reply to Tako2009

I too took the decision not to have an ablation . This, of course, may change in the future. I was first offered an ablation around 6/7 years ago. I have private medical insurance and felt that it was all about money. My AF was very infrequent, so I doubt if I would at that time have been offered an ablation on the NHS. Now, I have about 8-10 bouts of PAF a year. Each time I can identify a trigger, so it’s all down to life style really. I haven’t touched alcohol or caffeine for more than 6 years now because I found them both to be triggers. I also need to avoid desserts, chocolate and most artificial sweeteners. I also need to drink plenty of water and keep well hydrated. The one thing that I need to address now is my weight. I was a healthy weight, but taking Bisoprolol has slowed my metabolism down and is coupled with the fact that I lost my husband last year causing me to ‘comfort eat’. I have now managed to stop gaining weight, so now need to focus on losing it. For me, ablation is not the route that I want to go down at the moment. If it was a cure, then that would be different, but reading on here many people have numerous ablations and still are not free of AF. It’s all about choice really, I don’t consider myself to be bad enough to warrant an ablation. I do appreciate that some people have much more deliberating symptoms than I do and ablation is the right way to go.

Ianc2 profile image
Ianc2 in reply to Mrsvemb

Any particular type of chocolate?

Mrsvemb profile image
Mrsvemb in reply to Ianc2

It seems to be anything containing sugar. I do have a lot of food intolerances, the list of which seems to be growing.

doodle68 profile image
doodle68

Hi Tako :-) thank you for your reply .Our circumstances and decisions seem similar in many ways. My lifestyle changes are still a work in progress too .

Stay well ...

Bagrat profile image
Bagrat

Sounds like you are taking charge of your health in a way that makes sense. I have always believed that everyone has a specific idiosyncratic interpretation of the word "health" and this may change over the years.

I'm pretty sure at 21 my present situation would not have been desctibed as healthy. Now at 75 I can do more or less what I want to do, though it takes longer(!) .

If we are doing the best we can to maintain our health with or without medical intervention and without too much introspection then we're on track.

My cardiologist’s plan was to try medication first and only move to ablation if this failed to control symptoms. So far so good😊

I do know people who had a cardioversion in A&E for their first episode & went straight to ablation as they consulted an EP.

I am content on my Apixaban & Flecainide on which I am virtually symptom free & only have the side effect of odd dreams (Flecainide).

Thanks for reminding me I need to check when my next blood test & ECG is due.

Pat x

Goldfish7 profile image
Goldfish7

Hi doodle68. I think you have to take your own road forward and you seem to be making good decisions for you. I had my second ablation in Nov. last year and although I now appear to be PAF free (for as long as it continues!) which is great I have now got increased breathlessness, chest pain and runs of ectopics, which although they don't land me in hospital like the PAF attacks are really messing up my life and my ability to walk/exercise. In future I think I will take your route when the PAF arises again!!

Bagrat profile image
Bagrat in reply to Goldfish7

I suppose the difficulty is we will never know if other things might have cropped up anyway.

Goldfish7 profile image
Goldfish7 in reply to Bagrat

I agree

wilsond profile image
wilsond

Thank you for updating us and taking the time to write the post. My thoughts are exactly the same,awaiting results of 7 day monitor to see if EP agrees ..but at the end of the day it's my choice... Stay well doodle xxx

Bambi65 profile image
Bambi65

You and I both. I have been going doing accupuncture, in addition to lifestyle changes. Even thought ablation has been suggested and scheduled in 4 weeks, Im choosing not too. Many people have had multiple proceedures, and stil in Afib. And once its done, it can not be undone. Nope not for me

Tux18 profile image
Tux18

It does seem that you describe those of us with P-Af Correctly. One shoe doesn’t fit all. My ablation was in October last year. From Jan. -May my AF was more frequent than it had ever been before the ablation. At end of May things began to change for the better. Now for two months I’ve had almost no noticeable AF (I’ve always been very aware and it’s been debilitating) Now I have short periods of tachycardia, but nothing I can’t live with.

I’m not sure if it’s some changes I’ve made: daily meditations, drinking lots of water first thing when I get up and throughout the day, and as soon as I feel heart race I drink water. Also, most days get in 7000 steps or more. Or maybe the ablation helped, yet odd it took 7 moths after the ablation to help.

I’m curious as to what lifestyle changes you made in diet and exercise that are helping you?

doodle68 profile image
doodle68 in reply to Tux18

Hi Tux :-) was the question for me..

Ok life changes.

First I set out to lose weight and lost a stone and a half, after 2.5 years I still haven't achieved my goal of a BMI of 25, I am stuck at 26 but I will get there. I haven't put the weight I lost back on thought maybe because I didn't go for a time-limited diet but permanent lifestyle change instead. What I did achieve was losing more than %10 of my body weigh in line with the Legacy study that indicated there was a possibility losing this amount could help prevent the progression of AF.

I reluctantly gave up all alcohol, a lover of wine I found this difficult to begin with but it was taking in negative calories and I needed to lose weigh.

I already ate healthily making my own bread and everything from scratch but I expanded on this by almost cutting out meat cake biscuits and eating more vegatables. I already eat lots of fruit and nuts . I reduced meal sizes and moved my main meal to lunch time so I am active and not sitting around after a meal.

Already a walker roaming the fields with my dog every day I increased the speed of my walking to a brisk pace enough to raise my heart rate. I also introduced some daily exercises picked up from yoga videos into my daily routine. I had a problem with my knee but now that is better I intend joining a yoga class.

Always a night owl I started going to bed earlier so increasing my amount of sleep, healing time for my body. Bossy and opinionated I now walk away from stressful situations and avoid arguments, it really isn't worth it they increase the adrenaline and too much of that too often is not good for the heart. We are not cavemen reacting to the occasional fight/flight resonse but subject to a world full of daily stresses and irritations over many years for which we are not really designed .

Ianc2 profile image
Ianc2 in reply to doodle68

Thanks for your post. I had not read this study, but I have now and the quote below is taken directly from it:-

Results showed that afib burden and symptom severity decreased more among patients who lost and kept off at least 10 percent of their initial weight than among those with a weight loss of 3–9 percent or whose weight fluctuated significantly during the study period. In fact, 46 percent of patients who maintained at least a 10 percent weight loss were free of afib, without drugs or ablation, after 5 years .

impressive results. More food for thought.

doodle68 profile image
doodle68 in reply to Ianc2

Hi Ian :-) if you haven't already found it you may find this study of interest too..

Ten Lifestyle Modification Approaches to Treat Atrial Fibrillation

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

[quote =Conclusions; In summary, AF is the most common arrhythmia, particularly in the developed world. For countries like the US, lifestyle factors trump genetics. The fact that patients can prevent or modify the progression of AF has profound implications on reducing disease burden.

The lifestyle interventions discussed in this article, even if adopted in moderation, can help significantly. For those patients who are unable to completely reverse AF with lifestyle modification, these lifestyle changes will likely enhance AF treatment efficacy. Therefore, both internists and cardiologists need to become more aware and proactive in initiating early adoption of lifestyle modification to prevent and treat AF.]

Ianc2 profile image
Ianc2 in reply to doodle68

Thanks for the reference. I have looked at it, it makes interesting reading, covers quite a lot of ground and reinforces most of my beliefs. However it is a major challenge to a lot of peoples' lifestyles. The lure of the 'instant pill' or procedure is much easier to understand.

Maril1 profile image
Maril1 in reply to doodle68

Thanks , I found the link/study very interesting. When I was first diagnosed back in 2006 I was never told anything about managing the condition and followed the usual route of meds, cardioversion then ablation.At the time of my 2nd ablation in early January 2010 the EP said that there was a 90% chance rate of a cure if the new machine had been installed otherwise it was about 50/60% as apparently they were peeing in the dark. I tend to believe now that even the 50% was a massive exaggeration. Of course I would love to be proved wrong and would welcome any stats but can never seem to find any before I take the chance again as now I just treat it like other people treat a headache. Back in 2006 there was a Swedish website that suggested natural ways and I have used some of those quirky ways to this day when I have an attack.

allserene profile image
allserene

My EP says ablation 'cures' 98 % of the time with right sided flutter, and 92 % with left sided....at the first attempt, and close to 100% with subsequent procedures... He is a leading specialist in developing ablation techniques in the US

doodle68 profile image
doodle68 in reply to allserene

Hi allserene :-) I don't know much about atrial flutter (I have atrial fibrillation) but I understand ablation can work well for it .

A doctor in the US I admire John Mandrola, MD cardiac electrophysiology is I know sceptical about the reasons some practioners over there in the US promote ablation for atrial fibrillation without giving it much though .

allserene profile image
allserene in reply to doodle68

Tony Blair was ablated 20 years ago and is doing great... But yes we should always research stuff before we agree to it...and I like Independent hard statistics rather than recommendations which can be based on stuff like: "He had such a lovely soft touch and brought me coffee and got me to relax"......

Maril1 profile image
Maril1 in reply to allserene

I had an ablation for flutter in 2008 in Liverpool and it has not returned( touch wood ) but still suffer proxy afib.As for Blair he would get the best of everything on the NHS I remember the waiting time was about 2 years then yet he had his in a couple of days .I wouldn't wish this on my worst enemy but even as a labour voter I would make an exception for Blair.

allserene profile image
allserene in reply to Maril1

Liverpool ? Did you get your hubcaps nicked while you were getting the procedure ? lol... I reckon Tony only had a couple of events, so early intervention was the style even back then.. Early is the trend now in Wisconsin. Have to watch the cost though... My plan lets me have a colonsoscopy FREEEEEE.. and being from Yorkshire I thought great whack it up me pal... Now the bills are coming in.. colonoscopy FREE.....x K for anesthetic, x k for clipping a polyp off...x k for analyzing the polyp.... etc etc etc etc... Seems the FREEEEEE procedure is a "come on in" .... Good job I didn't have a cup of coffee coz that would be 10k on top !

Maril1 profile image
Maril1 in reply to allserene

Early intevention was the style for corrupt prime ministers with friends in high places maybe not for the ordinary punter I waited 2 years.

Funnily enough when I went to A&E the first time I parked on double yellow lines outside the hospital as it was late at night and I would be on my way in minutes but when I showed them my HR monitor and my HR was through the roof I was rushed in medics all around me needle in stomach before I could say anything .Told them about my car but they said I had to stay in .Tried to sneak out but the monitor alary went when I disconnected it .A kind nurse parked it in the consultants carpark overnight for me . I used that car park for a good few years until they got number plate recognition. Saved a fortune on scandalous hospital car park chargers

allserene profile image
allserene in reply to Maril1

"charges" you mean ? How can you accuse other people of being corrupt when you fraudulently park in the Consultant's spaces ("for a good few years") so they can't get to heart attacks quickly ? I suppose if you think if ear rings are exorbitantly priced, you can just take them..

Maril1 profile image
Maril1 in reply to allserene

Steady on. Obviously struck a nerve here . I was advised by the nurses in the hec centre to use it as I was in and out like a fiddler's elbow and the car park was always half empty. As for consultant getting to a heart attack you are joking. I help out since I've retired the odd day here and there and have yet to see a consultant attend a heart attack maybe someone's in their parking spec.

I have noticed many overworked doctors but no consultants

That sounds like a great choice to me. My doctor would not even entertain an ablation as it is clear that my lifestyle choices are cutting the number of episodes I have. Although I have higher BP than the doctor would like, he understands that every BP med I have taken has causes massive spikes in the number of AF episodes. He believes it is due to my MTHFR gene mutation.

Since I went full on Keto and accepted what my wife's functional medicine doctors were saying about the CARB -AFib connection, I have now gone 5 months without an episode, which is the longest time in the 33 years I have been dealing with A Fib. I also cut out all dairy products and gluten, which her doctors seem to think contributed to my problems. It also has helped that I am retired now and not under the constant stress of my job.

I do get my Flecainide pills refilled anyway because if I do have an episode I want to convert quickly. I noticed a few years ago that the newer the pills the faster I convert to sinus rhythm.

Maril1 profile image
Maril1 in reply to

I hope you don't mind me asking but what meds do you take for your Bp and which ones caused the spike in your Afib. I Iike youself have retired as it was shifts or the highway so I chose the the highway and my Afib episodes have reduced massively but my BP is quite high 140/90 but varies between 120/65 to 155/100.

in reply to Maril1

They tried me on Lisinopril first. It did nothing for the BP, but from the first dose I started getting A Fib every night. Then I ended up with a lichen planus behind my knee, which the first pathologist misdiagnosed as squamous cell cancer. Thankfully, the cancer surgeon had just seen a case in a woman on Lisinopril a couple of weeks earlier. A 2 week course of a strong steroid cleared it up completely!

They tried me on the diuretic HCT, but that caused A Fib and I felt weak all the time.

Then to Valsartan. Same issue - it did not lower BP, just caused A Fib. Many lots of it were recently recalled because they contain cancer causing chemicals.

Then he tried Amlodipine and it it also increased the A Fib episodes.

We finally called it quits when Metoprolol increased my A Fib episodes. I only take fish oil and Magnesium now.

My wife could not tolerate the Corguard nor the Lisinopril they tried on her. Her BP plunged so low she was always dizzy and took a pretty bad fall. She now sees a functional medicine doctor who advised her to drink 3 cups of Hibiscus Tea daily and to take 325 mg of Grapeseed Extract, 1200 mg of Resveratrol daily told her to eat 4 stalks of celery daily. He also proved she has white coat hypertension. Her BP was sky high at an office visit. They gave her 1 tablet of Diazapam and it dropped 40 points in 10 minutes. He said it was anxiety - she has had an irrational fear of doctors since childhood. The combination of food and supplements knocked her pressure down fast and it stays in the normal range with without any side effects. He also put her on the Keto diet. She is also 66 and looks and feels great. Her BP went from 190/100 to 115/76 without any meds.

I hope this helps.

Maril1 profile image
Maril1 in reply to

Thank you very much. I try not to take any medication if I can help it . Back in 2007/8 I was put on amioderone for permanent Aflutter which I found out later was useless for the condition but it caused my bradycardia ( resting HR 40/48). If I only new back then the side effects and that aflutter does not respond to any medication no matter how strong .

You might want to try this:

------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt??

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

Jalia profile image
Jalia in reply to

Interesting to read. However I was in hospital a few weeks ago with renal failure caused by severe dehydration but no sign of AF , rather surprisingly.

in reply to Jalia

If you are taking any meds that may affect your whole body chemistry and sugar and water may be a minor problem next to your meds. Who knows? Good luck!

- Rick Hyer.

doodle68 profile image
doodle68 in reply to

Hi Sugarist..

you say...

''ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.''

If giving up on all sugars suits you that's and although I try to avoid added sugars I would never give up fruit it is an essental part of my vegetarian diet.

in reply to doodle68

You don't necessarily have to "give up" fruits and sugars - just keep them down to whatever your threshold is. Try eating 150 grams of sugar one day and see if your Afib happens. If it doesn't, try 200 grams the next day. By trial and error you will find how much sugars you can eat in a day without triggering Afib. Better than taking meds if it works for you. If your threshold is 60 grams a day, then you are right - you have to eat that much to live and would have to seek other means to control or stop Afib. Good Luck!

- Rick.

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